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Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing

Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic... Background: The coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences, to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision-making. Increasing communication between patients and care teams is particularly important for children with chronic conditions. Juvenile idiopathic arthritis (JIA), the most common chronic pediatric rheumatic condition, is associated with increased pain, decreased function, and decreased quality of life. Objective: The aim of this study is to design a dashboard prototype for use in coproducing care in patients with JIA. We evaluated the use and needs of end users, obtained a consensus on the necessary dashboard data elements, and constructed display prototypes to inform meaningful discussions for coproduction. Methods: A human-centered design approach involving parents, patients, clinicians, and care team members was used to develop a dashboard to support the coproduction of care in 4 ambulatory pediatric rheumatology clinics. We engaged a multidisciplinary team (n=18) of patients, parents, clinicians, nurses, and staff during an in-person kick-off meeting followed by biweekly meetings. We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. The final dashboard components were determined via Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated by using the Plan-Do-Study-Act methodology. Patients and clinicians were surveyed regarding their experiences. Results: Teams achieved consensus on what data mattered most at the point of care to support patients with JIA, families, and clinicians collaborating to make the best possible health care decisions. Notable themes included the right data in the right place at the right time, data in once for multiple purposes, patient and family self-management components, and the opportunity for education and increased transparency. A final set of 11 dashboard data elements was identified, including patient-reported https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 1 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al outcomes, clinical data, and medications. Important design considerations featured the incorporation of real-time data, clearly labeled graphs, and vertical orientation to facilitate review and discussion. Prototype paper-testing with 36 patients and families yielded positive feedback, with 89% (8/9) to 100% (9/9) of parents (n=9) and 80% (8/10) to 90% (9/10) of clinicians (n=10) strongly agreeing or agreeing that the dashboard was useful during clinic discussions, helped to talk about what mattered most, and informed health care decision-making. Conclusions: We developed a dashboard prototype that displays patient-reported and clinical data over time, along with medications that can be used during a clinic visit to support meaningful conversations and shared decision-making among patients with JIA, their families, and their clinicians and care teams. (J Particip Med 2022;14(1):e34735) doi: 10.2196/34735 KEYWORDS human-centered design; coproduction; dashboard; pediatric rheumatology; juvenile idiopathic arthritis; JIA; juvenile arthritis; patient centered; patient-reported outcomes; patient communication; patient education; family education Swedish Rheumatology Quality Register dashboard serves as Introduction a long-standing rheumatology model [16]. It integrates and displays PROs (eg, pain, global health, and fatigue), key clinical Background data (eg, joint count and disease activity scores), and treatments The coproduction of care involves patients and families and medications longitudinally and has been used by patients partnering with their clinicians and care teams, with the premise and their clinicians since 2004 to engage in coproduction of that each brings their own perspective, knowledge, and expertise, care. The Swedish Rheumatology Quality approach was as well as their own values, goals, and preferences, to the associated with a 50% decrease in disease activity between 2004 partnership. Inviting and integrating these unique strengths and 2014 in people living in Sweden with rheumatoid arthritis support effective patient-family-clinician relationships [1-3]. (RA) [17]. Recent studies have shown that these partnerships can also be Dashboard use in the US rheumatology community is increasing, aided by implementing dashboards that display meaningful data building on earlier work in the field to provide data for clinical that can be reviewed together at the point of care to assess a decision support at the point of care [18]. Design efforts have patient’s progress and to make shared treatment decisions, been completed at the University of California, San Francisco, particularly for patients and families living with chronic illnesses health system to support an electronic health record [4-6]. (EHR)-based patient-facing dashboard for adult patients with Juvenile idiopathic arthritis (JIA) is the most common chronic RA [19,20]. However, we are not aware of similar efforts in rheumatic condition, affecting 1 in 1000 [7,8] children. Even patients with pediatric rheumatology and their families. Given with advances in treatment options such as biological the dearth of evidence-based care protocols in pediatric medications, children with JIA have decreased physical function, rheumatology, these patients and their families face an even worse health-related quality of life, and increased pain despite greater need to bring together PROs and key clinical data in improved disease activity [9-11]. Although the pediatric one place to support shared decision-making. To address this rheumatology field routinely collects patient-reported outcomes gap, we developed a human-centered co-design process to create (PROs) of pain, function, and disease activity for research and a prototype of an electronic JIA dashboard. collaborative improvement purposes [12,13], these data are not Objective regularly integrated into clinical practice to inform care and treatment decisions. Growing evidence suggests that leveraging Our objective was to design a real-time point-of-care dashboard such data at the point of care can lead to improved health to support partnerships between patients and families and their outcomes, which are of critical importance to children and clinicians by identifying the data and information that matter families living with JIA. These families manage complex most to them and designing the display for enhanced treatment regimens and regular visits with multiple communication and decision-making. subspecialists, including ophthalmology, psychology, and physical and occupational therapists, and usually require the Methods long-term use of injectable and infusion therapies [14]. It is also known that children, parents, and clinicians have different views Overview of disease and expectations of treatment outcomes, and it is Our study was guided by a human-centered design process [21] important to enable children to actively communicate their views to ensure that the final dashboard design would serve the needs with their clinician [15]. and goals of end users. The process involved deploying a series of iterative methods to (1) explore the context of use and needs Dashboard data visualization tools are used in health care to of end users and (2) achieve consensus on the dashboard data aggregate and integrate key data for review and discussion elements and overall dashboard design (Figure 1). during clinical encounters to support patient-centered care. The https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 2 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al Figure 1. Human-centered design process. sketching a dashboard mock-up, and discussing desired Ethics Approval dashboard uses and features from key stakeholder perspectives. This study was approved by the Dartmouth College Institutional Ensuring dashboard uptake by patients with JIA and their Review Board (#31341). families, clinicians, and care teams served as a guiding tenet for our work. Participants Following the kick-off meeting, the pilot site teams met The co-design process included clinical care team members biweekly via videoconference for subsequent co-design sessions (n=12: 3 physicians, 1 physician assistant, 2 advanced practice from April to December 2018. These sessions focused primarily nurses, 2 registered nurses, and 4 other staff members), a on gaining an understanding of the context of dashboard use teenager with JIA (n=1), and parents (n=5) from 3 US pediatric and the needs of end users, using human-centered design rheumatology sites (Hackensack University Medical Center, activities to ideate, explore, and observe. Activities included Stanford Children’s Health, and Wake Forest University). Sites process mapping, generating personas, journey mapping, were initially identified among members of the Childhood developing dashboard sketches, and visiting sites. Arthritis and Rheumatology Research Alliance (CARRA) and the Pediatric Rheumatology Care and Outcomes Improvement Process Mapping Network (PR-COIN) organizations. Sites with strong clinical To gain insight into their current state of care delivery and to leadership and information-technology collaborations were visualize opportunities for coproduction between patients, chosen. All the sites had the same EHR vendor. A fourth US families, and clinicians, each team created a flowchart [22] of site (University of California, San Francisco) was added during their care processes and corresponding data flows for patients the final dashboard design wireframe build. with JIA. Additional iterations on the dashboard design were guided by Personas an 11-member parent partner advisory group that met monthly throughout the co-design phase. This group included 5 parent Each site developed three personas: a pediatric rheumatologist, partners from the co-design sessions and 6 additional parent a parent or family member, and a child or teenager with JIA. partners identified by the Arthritis Foundation. A clinical Personas are archetypes or examples of end users (in this case, advisory group consisting of 5 additional clinicians provided the end users of the coproduction dashboard) and their patterns further input in one 60-minute session. that can be used to inform and guide design decisions. They clarify the goals, behavior patterns, and needs of an end-user The Dartmouth Institute for Health Policy and Clinical Practice population and generate useful design targets [23]. Teams used led the facilitation and general leadership of this initiative. a template to record persona elements, including interests, skills, goals, daily routines, likes and dislikes, motivation, context, Exploring Contexts and End-User Needs and needs and desires. Teams were asked to translate multiple We held a 2-day meeting in March 2018 and convened leaders conversations and observations into a representative set of from the Arthritis Foundation, CARRA, PR-COIN, and 3 to 5 persona characteristics; however, some teams used real life parent and clinical members from each of the pilot site teams. individuals for their personas. The meeting included working sessions for brainstorming, https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 3 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al also indicated their top 5 elements for aggregate reviews as a Journey Mapping cross-check against the rankings. After the second round of The parent partner advisory group participated in a journey voting, the domain containing self-management and other user mapping exercise [21] intended to capture the patient and family features was removed from the final round of voting, as it was lived experience in the care journey. Journey mapping described determined that the patient and family-facing self-management “walking through a visit”—from preparing for the visit at home, tool was outside the initial scope of the point-of-care dashboard. arriving at the clinic, moving through the clinic visit, and checking out to following up afterward. Parent partners In the third and final round of voting, team members were asked described actions, questions that needed answering, happy to prioritize the data elements based on modified MoSCoW moments (things that improved the care experience), and pain (must have, should have, could have, will not have) criteria points (frustrations and annoyances) for each step in the care [25]: must have, nice to have, will not have (but nice someday), process. The aim was to consider how to leverage happy and not a priority. After the results from the third round of voting moments and understand how to improve pain points in were tallied, a broader group of stakeholders—clinician advisory designing the dashboard innovation. group, parent partner advisory group, and CARRA and PR-COIN registry leaders—were engaged in reviewing and Dashboard Sketches offering feedback before the dashboard data elements were Teams engaged in a visual thinking exercise designed to finalized. generate ideas for dashboard design and invite commentary Specific measures or tools for each PRO data element were [24]. Each team member was instructed to draw a picture of reconciled and aligned with the data collection for the CARRA their ideal dashboard, review and discuss it with their team, and [12] and PR-COIN [26] registries, with the goal of data collected compare and consolidate the best ideas to create a team once and used for multiple purposes. In addition, measures or dashboard. Similarities and differences across team sketches tools validated for use in pediatric rheumatology were identified were noted and discussed during the co-design session. as preferable. Site Visits Low-Tech Dashboard Testing and Design Iteration The Dartmouth Institute for Health Policy and Clinical Practice Sites engaged in testing a paper-based version of the dashboard team conducted a site visit at each pilot site to engage key with a small number of clinical patients and families using the stakeholders (team members, local leadership and informatics Plan-Do-Study-Act framework [27]. The aim of rapid-cycle teams, and patients and families) in the dashboard design process testing was to assess the feasibility and utility of the dashboard and to observe clinical operations and care flows to better at the point of care and to incorporate feedback to iteratively understand the context and workflow of the dashboard. They refine and enhance the dashboard design and usability within met with patients and families (n=12) in individual and group the flow of care. settings to provide an overview of the dashboard initiative and capture their feedback and ideas for enhancing the information The dashboard prototype was created using a Microsoft Excel environment at the point of care. [28] template to display patient-reported data and key clinical data obtained from patients completing previsit questionnaires Building Consensus and the EHR. It was introduced to patients with JIA and their After exploring how a dashboard could support the needs and families by a rheumatology clinician. Parents were surveyed requirements of patients, families, clinicians, and care teams after the visit to rate their overall impressions of the prototype for use during clinic visits, teams engaged in determining the dashboard. Clinicians were also surveyed regarding their detailed design requirements for the dashboard. This process experiences with the dashboard. included finalizing the data elements, layout, and visual look Following low-tech testing, a third-party digital health solution and feel of the dashboard, and considering features to support organization was engaged to translate the findings from the self-management and other user needs. human-centered design process into a final wireframe of the Delphi Voting on Dashboard Data Elements dashboard design. Iterative design sessions were held to obtain Clinical care team members, patients, and parents participated feedback based on the preferences of the patients, families, in a Delphi voting process via web-based surveys and multisite clinicians, and care teams. team meetings to achieve consensus on a parsimonious set of data elements to be displayed on the dashboard. An initial list Results of data elements and dashboard features was compiled based on personas, dashboard sketches, and discussions with patients, Insights From Contexts and End-User Needs families, clinicians, and care teams during pilot site design Human-centered design activities demonstrated the needs of sessions and site visits. Teams were also asked to review the end users and the processes required to integrate a dashboard list and suggest additional items that might be missing. into the flow of clinical care. This iterative framework generated ideas and insights about the features and functionalities that are Dashboard elements were organized by domain in preparation most important to the design of the dashboard. Several notable for the 3 rounds of Delphi voting. The domains included PROs, themes emerged from iterative discussions between the project clinical data, medications, self-management, and other user facilitators and co-design teams throughout the co-design features. In the first 2 rounds, team members ranked the process: (1) the right data, in the right place, at the right time, elements within each domain using a 5-point Likert scale. They https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 4 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al (2) data in once for multiple purposes, (3) patient and family Making decisions about treatment plans and self-management components, and (4) opportunity for education medications is complex and involves weighing and increased transparency. pros/cons...need enough/sufficient information but not too overwhelming. [Clinician: multisite team The Right Data, in the Right Place, at the Right Time meeting] The EHR serves as a cumulative repository of the data and Trending data over time (including medication usage) was information generated at each clinical encounter. Pilot site teams identified as an essential functionality and included in all team stressed they did not want to replicate the EHR and instead dashboard sketches (Figure 2): arrived at a balance of data to support the coproduction of care: I would like to know how she is progressing better or worse over time. [Parent persona] Figure 2. Example dashboard sketch. cJADAS: clinical juvenile arthritis disease activity score; PGA: physician global assessment. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 5 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al In addition, the teams expressed a desire to personalize the Patient and Family Self-management Components dashboard with a patient photo and updates on life between Personas developed for this project, such as the example in visits: Figure 3, provide insight into patient and family needs in managing chronic diseases. Families of children and teenagers We normally just see snapshots of patients in clinics; with JIA desire a place to collect, track, and review disparate it would be great to have a bigger picture of what pieces of information and data needed to optimize the goes on in our patients’ lives on a day-to-day basis. management of their child’s health: [Clinician: multisite team meeting] I am looking forward to one place where my son’s Data in Once for Multiple Purposes health information is all in one place for me to see. A frustration identified by patients and families during the [Parent persona] journey mapping exercise was being asked the same questions A space for children and teenagers with JIA to self-report on repeatedly during a visit as well as completing questionnaires activities or symptoms important to them, a to-do list, and a and then not seeing the results or understanding how the data medication tracker were cited as desirable self-management were being used: features: A goal is to have information that gets shared actually I would like a way to keep track of how I feel mentally get to the provider—by the time we get to the and physically in between visits so that I can let my clinician, only 10% of what we’ve shared at every doctor know, especially since my visits are spread step of the visit process actually gets to the doctor. out. [Patient persona] [Parent: 2-day kick-off meeting] Furthermore, during the co-design sessions, parents shared the In addition, clinicians discovered that the collection of PROs information that they routinely collected to prepare for a clinic typically occurred toward the end of the visit, with a research visit, including laboratory work required and completed, coordinator collecting the data for research registry purposes. questions and updates to share with the physician, and the date Teams agreed that an important design specification would be of their child’s last eye examination. They expressed the need to ensure that previsit questionnaire data both inform the clinic to have this information centrally available for previsit planning. visit and populate registries. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 6 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al Figure 3. Parent persona. on the dashboard. Clinicians and care team members assured Opportunity for Patient Education and Increased parents that they always reviewed alanine aminotransferase Transparency scores as part of every visit; however, they deferred to parent Involving patients and parents alongside clinicians and care preference to include it on the dashboard. Similarly, patients teams during the design process offered each group unique and parents were unaware of measures used for clinical insight into the data and information most important to each in assessment, such as the Juvenile Arthritis Disease Activity Score coproducing care. For example, parents were particularly (JADAS) [29]. Clinicians admitted that they did not typically concerned about medication side effects and lobbied to include explain the clinical and research importance of the JADAS, a laboratory measure of liver toxicity (alanine aminotransferase) acknowledging that the dashboard would offer an opportunity https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 7 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al for education and increased transparency with patients and included PROs, key clinical data, and current and past families: medications. The initial round of voting started with 25 data elements: 13 in the PRO domain, 11 in the clinical data domain, We would like to spend less time charting and dealing and 1 associated with medications. After 3 rounds of voting, a with insurance companies and more time with our consensus was reached on the 11 data elements summarized in patients on education and management of the disease, Textbox 1. ensuring that we/they have a true understanding of their medical condition and treatments, daily life, and Data elements that were initially considered, but did not achieve coping strategies. We want to promote self-reliance consensus, included fatigue, morning stiffness, mental health, and self-management. [Clinician persona] uveitis status, and several laboratory values (C-reactive protein, erythrocyte sedimentation rate, and aspartate aminotransferase). Consensus on Dashboard Design Finalized Set of Data Elements The Delphi method was used to reach consensus on the final set of dashboard data elements. The necessary data domains Textbox 1. Final dashboard data elements. Patient-reported outcomes Concerns, questions: free-text patient, parent, and family questions or concerns for discussion in the visit Patient global assessment: ordinal 0-10 scale, patient’s assessment of overall well-being Physical function: Patient Reported Outcomes Measurement Information System (PROMIS) v1.0 Pediatric Upper Extremity short form raw summed score; PROMIS v1.0 Pediatric Mobility short form raw summed score Pain, pain interference: ordinal 0-10 current rating of pain and PROMIS v1.0 Pain Interference Short Form raw summed score Medication adherence: 5-point Likert scale that indicates how often medications are being taken as prescribed and includes the option of “I am not currently taking any prescribed rheumatology medications.” Medication side effects: list of symptoms experienced with current medications Clinical data Joint count: total number of tender joints and total number of swollen joints Provider global assessment: ordinal 0-10 scale (provider’s assessment of patient’s overall disease activity) Disease activity (Juvenile Arthritis Disease Activity Score): 0-30 composite score that incorporates patient global assessment, provider global assessment, and joint count Liver toxicity: alanine aminotransferase Medications Medications: medication name, dose, route, start and stop dates, and frequency positive (Figures 5 and 6), with 89% (8/9) to 100% (9/9) of Low-Tech Testing and Design Iteration parents and 80% (8/10) to 90% (9/10) of clinicians strongly The paper-based prototype (Figure 4) was tested with 36 patients agreeing or agreeing that the dashboard (1) was useful during with JIA (aged 3-20 years; 24/36, 67% female) during a clinical clinical discussions, (2) helped to talk about what mattered most, visit. Parent (n=9) and clinician (n=10) feedback was very and (3) helped to make health care decisions. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 8 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al Figure 4. Paper-based dashboard prototype. cJADAS10: 10-joint clinical juvenile arthritis disease activity score. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 9 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al Figure 5. Dashboard low-tech testing: parent feedback (n=9). Figure 6. Dashboard low-tech testing: clinician feedback (n=10). Low-tech testing also uncovered important insights about the global, and disease activity score), and the visualization of data value of the dashboard, including the ability of patients and over time to help make decisions. Although many PRO measures parents to share questions and concerns in advance of the visit, are still being validated for clinical use [30], patients and greater transparency in clinical assessment data routinely families are interested in seeing their scores in real time [31] collected by clinicians and care teams (eg, joint count, physician and comparing them with past visits. The dashboard designs https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 10 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al were iterated to include these elements and to improve the visual real-time basis to include the current visit’s clinical assessment interface throughout the study. data as an important element of visualizing progress over time and engaging in shared decision-making, (2) clearly labeling Parents reported that being asked in advance about what they the graphs for ease of reading and interpretation given varying wanted to discuss most prevented them from forgetting anything scales of the data elements, and (3) orientation of the flow during the visit. Clinicians appreciated understanding patient vertically to facilitate review and discussion. and parent concerns and ensured that these questions or concerns were addressed. One clinician shared an experience of how the The final dashboard design wireframe is illustrated in Figure 7. responses highlighted the specific concerns of both the patient Three sections of the dashboard emerged: (1) patient and parent (scared and did not want to restart medications) and his parents and family questions and concerns about the visit, (2) a snapshot (concerned about setbacks from their child’s flare), setting the of how the patient is currently doing, and (3) a trends section framework for the visit. Another clinician reported, “We often that longitudinally displays PROs, clinical data, and medications forget to ask certain questions, and the dashboard reminds us and reported side effects. The layout is intended to correspond to focus on the patient’s concerns rather than just looking at a to the clinical workflow. The top two sections provide the clinical picture.” clinician with initial insight into the patient and family needs and how the patient is currently feeling, allowing for more rapid Feedback on the usability of the paper-based prototype also movement into the core of the visit. The trends section is yielded considerations for the dashboard design and data display, intended for review after data from the clinical assessment have including (1) ensuring that the dashboard is updated on a been captured and updated in real time. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 11 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al Figure 7. Final dashboard design wireframe. context of use and needs of end users, obtaining consensus on Discussion necessary data elements, and constructing a display prototype. Notable themes included the right data, in the right place, at the Principal Findings right time; data in once for multiple purposes; patient and family This study used human-centered design principles to involve self-management components; and opportunity for education parents, patients, clinicians, and care team members in the and increased transparency. A final set of 11 dashboard data development of a coproduction of care dashboards for clinical elements was identified, including PROs, clinical data, and use in 4 diverse ambulatory pediatric rheumatology clinics medications. Important design considerations include the across the United States. This process included evaluating the incorporation of real-time data, clearly labeled graphs, and https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 12 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al vertical orientation to facilitate reviews and discussions. (physician global assessment, tender and swollen joint count, Prototype paper-testing with 36 patients and families yielded and patient global assessment) to promote greater understanding positive feedback about the dashboard’s usefulness during clinic by patients and families regarding how this score is derived and discussions, helped to talk about what mattered most, and used. Finally, and most notably, our set includes an informed health care decision-making. agenda-setting question and questions regarding medication adherence and possible side effects to prompt discussion about Key components of the dashboard display included PROs, medication intolerance, which can have a significant impact on clinical data, and medications; all trended longitudinally with quality of life [34]. clearly labeled graphics and plans for real-time updates. Interestingly, a previsit agenda-setting question to be asked of Strengths and Limitations both patients and families for “Questions or Concerns?” is The strengths of our study include integrating patients and deemed an important component of patient-centered care. This parents as full members of the pilot site teams, employing a is consistent with findings in other coproduction projects in variety of activities to gain insight into the needs of end users, which patient and family questions and concerns helped to focus and collecting qualitative and quantitative data to achieve the content of the visits and prioritize what matters most to them consensus on a dashboard design. We used rapid-cycle iterative [4,6]. In addition, our final dashboard prototype is similar to testing of a paper dashboard to simulate how a dashboard might dashboards developed for adult RA [19] in their longitudinal work to support the coproduction cycle of (1) coassessing the presentation of PRO and clinical data along with medications, patient’s current health status, (2) codeciding the next steps, (3) intended to enhance communication about how well medications co-designing the care plan, and (4) codelivering care [35]. work to improve patient symptoms, functioning, and disease Although this study highlights the importance of involving end activity. users in the design process, we acknowledge several potential Notably, all teams agreed that data collection should be limitations in our approach. We leveraged highly engaged streamlined and used for clinical care, collaborative clinical sites, care teams, and patients and families and used improvement networks [13], and research, an important step convenience sampling for development and testing; therefore, toward the development of an integrated and sustainable learning the perspectives we gained may not be representative of all health system [32]. Our prototype design encompasses the pediatric rheumatology practices or populations. We engaged framework of having the right data at the right time to foster 4 diverse clinical sites, including small and large centers, in enhanced communication and collaboration during a clinical various locations across the United States. As we proceed to encounter and emphasizes the need for streamlined data the next phase of building an electronic version of the dashboard, collection to support multiple purposes and uses. Many of the we will have the opportunity to test the dashboard and assess dashboard data elements (functional status, pain score, patient its usability and utility across a larger target population. Another global, joint count, and JADAS) were congruent with data limitation was the inability to pursue the design of a patient and collected within the CARRA [12] and PR-COIN [26] registries, family self-management tool. Patients and families expressed as well as the Canadian JIA research network [33]. An a strong desire to have a tool for individualized daily symptom opportunity exists to integrate these clinical care data with those tracking and note-taking to capture their experiences of living required for research and quality improvement purposes. This with a chronic disease. We acknowledge the importance of these integration represents a core pillar of building a learning health functionalities [36]; however, the technological requirements system [32] and allows for reduced burden on patients and for integrating them as part of a point-of-care dashboard were families and more efficient data usage and optimization. determined to be beyond the initial scope and capabilities of Although our design is a paper prototype with an associated our study. wireframe, the long-term goal is to develop an electronic Conclusions dashboard integrated within the EHR. Notably, because all institutions use the same EHR, we anticipate that the use of We used a human-centered design process to actively engage standardized data mapping will facilitate interoperability among patients with JIA, families, clinicians, and care teams to research networks. successfully create a blueprint for a point-of-care coproduction dashboard to foster meaningful conversations and shared Although prior work has been completed on dashboards in decision-making about care and treatment plans. The necessary rheumatology [17,19], our study is unique from these published dashboard data elements include PROs, clinical data, and works in several notable ways. First, our study, which focused medications, and the display should use real-time data, have on the population with JIA, included 4 pediatric rheumatology clearly labeled graphs, and a vertical orientation. Data capture teams, including patients and parents as team members, from that supports clinical care and research and improvement efforts diverse geographic locations who worked collaboratively is ideal. Results from dashboard testing indicated that it was throughout the co-design process. We also deployed a variety useful during clinical discussions, helped to talk about what of human-centered design activities, including process mapping, mattered most, and informed health care decision-making. personas, journey mapping, dashboard sketches, and observations. Third, our final set of dashboard data elements Future study efforts informed by this work and planned by the was greater than that of the adult population with RA [17,19]. authors include (1) creating an electronic version of the Although both the adult and pediatric rheumatology dashboard point-of-care dashboard, (2) preparing for a successful launch data sets include a composite disease activity score, our teams through workflow integration and patient and family education felt that it was important to include component measures https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 13 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al efforts, (3) testing and implementing the dashboard at the 4 formative evaluation of its usability and utility in supporting pediatric rheumatology pilot sites, and (4) conducting a coproduction of care. Acknowledgments The authors wish to thank all patients and their families for their time and commitment to participating in the dashboard co-design efforts, including Laura Curtis, Jennifer Danielson, Nick Kim, Cathy Kuncken, Dylan Kuncken, Rochelle Lentini, Robert Shelton, Sonya Shelton, Robin Soler, and Kirsten Wilder. They would also like to thank the health care professionals who participated in various phases of this study and displayed their passion to improve care for their patients with juvenile idiopathic arthritis, including Tracie Conrad, Quoc Du, Sarah Hunt, Ivy Hernandez-Jones, Maria Martinez, Melissa Roybal, Marielena Vallejo, and Lauren Vannoy. The authors would also like to thank Jake Casale for his thoughtful and innovative input and tireless commitment during the co-design process. The authors would like to acknowledge all participating pediatric rheumatology practices for embarking on this journey: Hackensack University Medical Center, Stanford Children’s Health, University of California San Francisco, and Wake Forest Baptist Brenner Children’s Hospital. The authors are grateful to the Arthritis Foundation and Ann Palmer, Guy Eakin, Suzanne Schrandt, and Laura Marrow for their steadfast support of this important work dedicated to bringing the voice of the patient and family into the point of care. Conflicts of Interest None declared. References 1. Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Opipari-Arrigan L, et al. Coproduction of healthcare service. BMJ Qual Saf 2016;25(7):509-517 [FREE Full text] [doi: 10.1136/bmjqs-2015-004315] [Medline: 26376674] 2. Schoemaker CG, Swart JF, Wulffraat NM. Treating juvenile idiopathic arthritis to target: what is the optimal target definition to reach all goals? Pediatr Rheumatol Online J 2020;18(1):34 [FREE Full text] [doi: 10.1186/s12969-020-00428-7] [Medline: 32299430] 3. Ravelli A, Consolaro A, Horneff G, Laxer RM, Lovell DJ, Wulffraat NM, et al. Treating juvenile idiopathic arthritis to target: recommendations of an international task force. Ann Rheum Dis 2018;77(6):819-828. [doi: 10.1136/annrheumdis-2018-213030] [Medline: 29643108] 4. Van Citters AD, Gifford AH, Brady C, Dunitz JM, Elmhirst M, Flath J, et al. Formative evaluation of a dashboard to support coproduction of healthcare services in cystic fibrosis. J Cyst Fibros 2020;19(5):768-776. [doi: 10.1016/j.jcf.2020.03.009] [Medline: 32354650] 5. Opipari-Arrigan L, Dykes DM, Saeed SA, Thakkar S, Burns L, Chini BA, et al. Technology-enabled health care collaboration in pediatric chronic illness: pre-post interventional study for feasibility, acceptability, and clinical impact of an electronic health record-linked platform for patient-clinician partnership. JMIR Mhealth Uhealth 2020;8(11):e11968 [FREE Full text] [doi: 10.2196/11968] [Medline: 33242014] 6. Van Citters AD, Holthoff MM, Kennedy AM, Melmed GY, Oberai R, Siegel CA, et al. Point-of-care dashboards promote coproduction of healthcare services for patients with inflammatory bowel disease. Int J Qual Health Care 2021;33(Supplement_2):ii40-ii47. [doi: 10.1093/intqhc/mzab067] [Medline: 34849970] 7. Mielants H, Veys EM, Maertens M, Goemaere S, De Clercq L, Castro S, et al. Prevalence of inflammatory rheumatic diseases in an adolescent urban student population, age 12 to 18, in Belgium. Clin Exp Rheumatol 1993;11(5):563-567. [Medline: 8275595] 8. Danner S, Sordet C, Terzic J, Donato L, Velten M, Fischbach M, et al. Epidemiology of juvenile idiopathic arthritis in Alsace, France. J Rheumatol 2006;33(7):1377-1381. [Medline: 16821272] 9. Rumsey DG, Guzman J, Rosenberg AM, Huber AM, Scuccimarri R, Shiff NJ, Research in Arthritis in Canadian Children Emphasizing Outcomes Investigators. Worse quality of life, function, and pain in children with enthesitis, irrespective of their juvenile arthritis category. Arthritis Care Res (Hoboken) 2020;72(3):441-446. [doi: 10.1002/acr.23844] [Medline: 30740939] 10. Seid M, Huang B, Niehaus S, Brunner HI, Lovell DJ. Determinants of health-related quality of life in children newly diagnosed with juvenile idiopathic arthritis. Arthritis Care Res (Hoboken) 2014;66(2):263-269 [FREE Full text] [doi: 10.1002/acr.22117] [Medline: 23983144] 11. Oen K, Guzman J, Dufault B, Tucker LB, Shiff NJ, Duffy KW, the Research in Arthritis in Canadian Children emphasizing Outcomes (ReACCh-Out) investigators. Health-related quality of life in an inception cohort of children with juvenile idiopathic arthritis: a longitudinal analysis. Arthritis Care Res (Hoboken) 2018;70(1):134-144. [doi: 10.1002/acr.23236] [Medline: 28320056] https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 14 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al 12. Beukelman T, Kimura Y, Ilowite NT, Mieszkalski K, Natter MD, Burrell G, CARRA Registry Investigators. The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months. Pediatr Rheumatol Online J 2017;15(1):30 [FREE Full text] [doi: 10.1186/s12969-017-0160-6] [Medline: 28416023] 13. Harris JG, Bingham CA, Morgan EM. Improving care delivery and outcomes in pediatric rheumatic diseases. Curr Opin Rheumatol 2016;28(2):110-116 [FREE Full text] [doi: 10.1097/BOR.0000000000000257] [Medline: 26780426] 14. Ringold S, Angeles-Han ST, Beukelman T, Lovell D, Cuello CA, Becker ML, et al. 2019 American college of rheumatology/arthritis foundation guideline for the treatment of juvenile idiopathic arthritis: therapeutic approaches for non-systemic polyarthritis, sacroiliitis, and enthesitis. Arthritis Care Res (Hoboken) 2019;71(6):717-734 [FREE Full text] [doi: 10.1002/acr.23870] [Medline: 31021516] 15. Lundberg V, Sandlund M, Eriksson C, Janols R, Lind T, Fjellman-Wiklund A. How children and adolescents with juvenile idiopathic arthritis participate in their healthcare: health professionals' views. Disabil Rehabil (forthcoming) 2020:1-8. [doi: 10.1080/09638288.2020.1811406] [Medline: 32875956] 16. Ovretveit J, Keller C, Hvitfeldt Forsberg H, Essén A, Lindblad S, Brommels M. Continuous innovation: developing and using a clinical database with new technology for patient-centred care--the case of the Swedish quality register for arthritis. Int J Qual Health Care 2013;25(2):118-124. [doi: 10.1093/intqhc/mzt002] [Medline: 23360809] 17. Nelson EC, Dixon-Woods M, Batalden PB, Homa K, Van Citters AD, Morgan TS, et al. Patient focused registries can improve health, care, and science. BMJ 2016;354:i3319 [FREE Full text] [doi: 10.1136/bmj.i3319] [Medline: 27370543] 18. Newman ED, Lerch V, Billet J, Berger A, Kirchner HL. Improving the quality of care of patients with rheumatic disease using patient-centric electronic redesign software. Arthritis Care Res (Hoboken) 2015;67(4):546-553 [FREE Full text] [doi: 10.1002/acr.22479] [Medline: 25417958] 19. Ragouzeos D, Gandrup J, Berrean B, Li J, Murphy M, Trupin L, et al. "Am I OK?" using human centered design to empower rheumatoid arthritis patients through patient reported outcomes. Patient Educ Couns 2019;102(3):503-510 [FREE Full text] [doi: 10.1016/j.pec.2018.10.016] [Medline: 30446358] 20. Liu LH, Garrett SB, Li J, Ragouzeos D, Berrean B, Dohan D, et al. Patient and clinician perspectives on a patient-facing dashboard that visualizes patient reported outcomes in rheumatoid arthritis. Health Expect 2020;23(4):846-859 [FREE Full text] [doi: 10.1111/hex.13057] [Medline: 32270591] 21. Stickdorn M, Schneider J. This is service design thinking: basics, tools, cases. Hoboken, NJ: Wiley; 2011. 22. Quality improvement essentials toolkit. Institute for Healtcare Improvement. 2017. URL: http://www.ihi.org/resources/ Pages/Tools/Quality-Improvement-Essentials-Toolkit.aspx [accessed 2021-08-03] 23. Goodwin K. Designing for the digital age: how to create human-centered products and services. Indianapolis, IN: Wiley; 24. Rhode M. Sketching: the visual thinking power tool. A List Apart. 2011. URL: https://alistapart.com/article/ sketching-the-visual-thinking-power-tool/ [accessed 2021-08-03] 25. Clegg D, Barker R. Case method fast track: a rad approach. Boston, MA: Addison-Wesley Professional; 1994. 26. Harris J, Morgan E, Vora S, Gilbert M, Yildirim-Toruner C, Griffin N, et al. New juvenile idiopathic arthritis quality measure set for the pediatric rheumatology care and outcomes improvement network. In: 2020 ACR Pediatric Rheumatology Symposium. 2020 Presented at: ACR Convergence '20; November 5-9, 2020; Virtual p. 179. [doi: 10.1136/annrheumdis-2019-eular.4395] 27. Langley GJ, Moen RD, Nolan KM, Nolan TW, Norman CL, Provost LP. The improvement guide: a practical approach to enhancing organizational performance. 2nd edition. San Francisco, CA: Jossey-Bass; 2009. 28. Microsoft Excel for Mac. Microsoft Corporation. 2021. URL: https://apps.apple.com/us/app/microsoft-excel/ id462058435?mt=12 [accessed 2021-08-03] 29. Consolaro A, Giancane G, Schiappapietra B, Davì S, Calandra S, Lanni S, et al. Clinical outcome measures in juvenile idiopathic arthritis. Pediatr Rheumatol Online J 2016;14(1):23 [FREE Full text] [doi: 10.1186/s12969-016-0085-5] [Medline: 27089922] 30. Mann CM, Schanberg LE, Wang M, von Scheven E, Lucas N, Hernandez A, et al. Identifying clinically meaningful severity categories for PROMIS pediatric measures of anxiety, mobility, fatigue, and depressive symptoms in juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus. Qual Life Res 2020;29(9):2573-2584. [doi: 10.1007/s11136-020-02513-6] [Medline: 32410143] 31. Hersh AO, Salimian PK, Weitzman ER. Using patient-reported outcome measures to capture the patient's voice in research and care of juvenile idiopathic arthritis. Rheum Dis Clin North Am 2016;42(2):333-346 [FREE Full text] [doi: 10.1016/j.rdc.2016.01.004] [Medline: 27133493] 32. Institute of Medicine (US) Roundtable on Evidence-Based Medicine. In: Olsen L, Aisner D, McGinnis JM, editors. The learning healthcare system: workshop summary. Washington, D.C: National Academic Press (US); 2007. 33. Barber CE, Twilt M, Pham T, Currie GR, Benseler S, Yeung RS, et al. A Canadian evaluation framework for quality improvement in childhood arthritis: key performance indicators of the process of care. Arthritis Res Ther 2020;22(1):53 [FREE Full text] [doi: 10.1186/s13075-020-02151-w] [Medline: 32192528] https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 15 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al 34. Weitzman ER, Wisk LE, Salimian PK, Magane KM, Dedeoglu F, Hersh AO, et al. Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis. J Patient Rep Outcomes 2018;2:1 [FREE Full text] [doi: 10.1186/s41687-017-0025-2] [Medline: 29645010] 35. Elwyn G, Nelson E, Hager A, Price A. Coproduction: when users define quality. BMJ Qual Saf 2020;29(9):711-716 [FREE Full text] [doi: 10.1136/bmjqs-2019-009830] [Medline: 31488570] 36. Cai RA, Beste D, Chaplin H, Varakliotis S, Suffield L, Josephs F, et al. Developing and evaluating JIApp: acceptability and usability of a smartphone app system to improve self-management in young people with juvenile idiopathic arthritis. JMIR Mhealth Uhealth 2017;5(8):e121 [FREE Full text] [doi: 10.2196/mhealth.7229] [Medline: 28811270] Abbreviations CARRA: Childhood Arthritis and Rheumatology Research Alliance EHR: electronic health record JADAS: Juvenile Arthritis Disease Activity Score JIA: juvenile idiopathic arthritis MoSCoW: must have, should have, could have, will not have PR-COIN: Pediatric Rheumatology Care and Outcomes Improvement Network PRO: patient-reported outcome RA: rheumatoid arthritis US: United States Edited by S Woods, M Hudson; submitted 05.11.21; peer-reviewed by A Oostdyk, S Badawy; comments to author 12.12.21; revised version received 09.01.22; accepted 08.02.22; published 22.04.22 Please cite as: Taxter A, Johnson L, Tabussi D, Kimura Y, Donaldson B, Lawson E, Del Gaizo V, Vitelli D, Pinter C, Van Citters A, Nelson E, Lee Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing J Particip Med 2022;14(1):e34735 URL: https://jopm.jmir.org/2022/1/e34735 doi: 10.2196/34735 PMID: 35133283 ©Alysha Taxter, Lisa Johnson, Doreen Tabussi, Yukiko Kimura, Brittany Donaldson, Erica Lawson, Vincent Del Gaizo, Daniela Vitelli, Corinne Pinter, Aricca Van Citters, Eugene Nelson, Tzielan Lee. Originally published in Journal of Participatory Medicine (https://jopm.jmir.org), 22.04.2022. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in Journal of Participatory Medicine, is properly cited. The complete bibliographic information, a link to the original publication on https://jopm.jmir.org, as well as this copyright and license information must be included. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 16 (page number not for citation purposes) XSL FO RenderX http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of Participatory Medicine JMIR Publications

Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing

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2152-7202
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10.2196/34735
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Abstract

Background: The coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences, to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision-making. Increasing communication between patients and care teams is particularly important for children with chronic conditions. Juvenile idiopathic arthritis (JIA), the most common chronic pediatric rheumatic condition, is associated with increased pain, decreased function, and decreased quality of life. Objective: The aim of this study is to design a dashboard prototype for use in coproducing care in patients with JIA. We evaluated the use and needs of end users, obtained a consensus on the necessary dashboard data elements, and constructed display prototypes to inform meaningful discussions for coproduction. Methods: A human-centered design approach involving parents, patients, clinicians, and care team members was used to develop a dashboard to support the coproduction of care in 4 ambulatory pediatric rheumatology clinics. We engaged a multidisciplinary team (n=18) of patients, parents, clinicians, nurses, and staff during an in-person kick-off meeting followed by biweekly meetings. We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. The final dashboard components were determined via Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated by using the Plan-Do-Study-Act methodology. Patients and clinicians were surveyed regarding their experiences. Results: Teams achieved consensus on what data mattered most at the point of care to support patients with JIA, families, and clinicians collaborating to make the best possible health care decisions. Notable themes included the right data in the right place at the right time, data in once for multiple purposes, patient and family self-management components, and the opportunity for education and increased transparency. A final set of 11 dashboard data elements was identified, including patient-reported https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 1 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al outcomes, clinical data, and medications. Important design considerations featured the incorporation of real-time data, clearly labeled graphs, and vertical orientation to facilitate review and discussion. Prototype paper-testing with 36 patients and families yielded positive feedback, with 89% (8/9) to 100% (9/9) of parents (n=9) and 80% (8/10) to 90% (9/10) of clinicians (n=10) strongly agreeing or agreeing that the dashboard was useful during clinic discussions, helped to talk about what mattered most, and informed health care decision-making. Conclusions: We developed a dashboard prototype that displays patient-reported and clinical data over time, along with medications that can be used during a clinic visit to support meaningful conversations and shared decision-making among patients with JIA, their families, and their clinicians and care teams. (J Particip Med 2022;14(1):e34735) doi: 10.2196/34735 KEYWORDS human-centered design; coproduction; dashboard; pediatric rheumatology; juvenile idiopathic arthritis; JIA; juvenile arthritis; patient centered; patient-reported outcomes; patient communication; patient education; family education Swedish Rheumatology Quality Register dashboard serves as Introduction a long-standing rheumatology model [16]. It integrates and displays PROs (eg, pain, global health, and fatigue), key clinical Background data (eg, joint count and disease activity scores), and treatments The coproduction of care involves patients and families and medications longitudinally and has been used by patients partnering with their clinicians and care teams, with the premise and their clinicians since 2004 to engage in coproduction of that each brings their own perspective, knowledge, and expertise, care. The Swedish Rheumatology Quality approach was as well as their own values, goals, and preferences, to the associated with a 50% decrease in disease activity between 2004 partnership. Inviting and integrating these unique strengths and 2014 in people living in Sweden with rheumatoid arthritis support effective patient-family-clinician relationships [1-3]. (RA) [17]. Recent studies have shown that these partnerships can also be Dashboard use in the US rheumatology community is increasing, aided by implementing dashboards that display meaningful data building on earlier work in the field to provide data for clinical that can be reviewed together at the point of care to assess a decision support at the point of care [18]. Design efforts have patient’s progress and to make shared treatment decisions, been completed at the University of California, San Francisco, particularly for patients and families living with chronic illnesses health system to support an electronic health record [4-6]. (EHR)-based patient-facing dashboard for adult patients with Juvenile idiopathic arthritis (JIA) is the most common chronic RA [19,20]. However, we are not aware of similar efforts in rheumatic condition, affecting 1 in 1000 [7,8] children. Even patients with pediatric rheumatology and their families. Given with advances in treatment options such as biological the dearth of evidence-based care protocols in pediatric medications, children with JIA have decreased physical function, rheumatology, these patients and their families face an even worse health-related quality of life, and increased pain despite greater need to bring together PROs and key clinical data in improved disease activity [9-11]. Although the pediatric one place to support shared decision-making. To address this rheumatology field routinely collects patient-reported outcomes gap, we developed a human-centered co-design process to create (PROs) of pain, function, and disease activity for research and a prototype of an electronic JIA dashboard. collaborative improvement purposes [12,13], these data are not Objective regularly integrated into clinical practice to inform care and treatment decisions. Growing evidence suggests that leveraging Our objective was to design a real-time point-of-care dashboard such data at the point of care can lead to improved health to support partnerships between patients and families and their outcomes, which are of critical importance to children and clinicians by identifying the data and information that matter families living with JIA. These families manage complex most to them and designing the display for enhanced treatment regimens and regular visits with multiple communication and decision-making. subspecialists, including ophthalmology, psychology, and physical and occupational therapists, and usually require the Methods long-term use of injectable and infusion therapies [14]. It is also known that children, parents, and clinicians have different views Overview of disease and expectations of treatment outcomes, and it is Our study was guided by a human-centered design process [21] important to enable children to actively communicate their views to ensure that the final dashboard design would serve the needs with their clinician [15]. and goals of end users. The process involved deploying a series of iterative methods to (1) explore the context of use and needs Dashboard data visualization tools are used in health care to of end users and (2) achieve consensus on the dashboard data aggregate and integrate key data for review and discussion elements and overall dashboard design (Figure 1). during clinical encounters to support patient-centered care. The https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 2 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al Figure 1. Human-centered design process. sketching a dashboard mock-up, and discussing desired Ethics Approval dashboard uses and features from key stakeholder perspectives. This study was approved by the Dartmouth College Institutional Ensuring dashboard uptake by patients with JIA and their Review Board (#31341). families, clinicians, and care teams served as a guiding tenet for our work. Participants Following the kick-off meeting, the pilot site teams met The co-design process included clinical care team members biweekly via videoconference for subsequent co-design sessions (n=12: 3 physicians, 1 physician assistant, 2 advanced practice from April to December 2018. These sessions focused primarily nurses, 2 registered nurses, and 4 other staff members), a on gaining an understanding of the context of dashboard use teenager with JIA (n=1), and parents (n=5) from 3 US pediatric and the needs of end users, using human-centered design rheumatology sites (Hackensack University Medical Center, activities to ideate, explore, and observe. Activities included Stanford Children’s Health, and Wake Forest University). Sites process mapping, generating personas, journey mapping, were initially identified among members of the Childhood developing dashboard sketches, and visiting sites. Arthritis and Rheumatology Research Alliance (CARRA) and the Pediatric Rheumatology Care and Outcomes Improvement Process Mapping Network (PR-COIN) organizations. Sites with strong clinical To gain insight into their current state of care delivery and to leadership and information-technology collaborations were visualize opportunities for coproduction between patients, chosen. All the sites had the same EHR vendor. A fourth US families, and clinicians, each team created a flowchart [22] of site (University of California, San Francisco) was added during their care processes and corresponding data flows for patients the final dashboard design wireframe build. with JIA. Additional iterations on the dashboard design were guided by Personas an 11-member parent partner advisory group that met monthly throughout the co-design phase. This group included 5 parent Each site developed three personas: a pediatric rheumatologist, partners from the co-design sessions and 6 additional parent a parent or family member, and a child or teenager with JIA. partners identified by the Arthritis Foundation. A clinical Personas are archetypes or examples of end users (in this case, advisory group consisting of 5 additional clinicians provided the end users of the coproduction dashboard) and their patterns further input in one 60-minute session. that can be used to inform and guide design decisions. They clarify the goals, behavior patterns, and needs of an end-user The Dartmouth Institute for Health Policy and Clinical Practice population and generate useful design targets [23]. Teams used led the facilitation and general leadership of this initiative. a template to record persona elements, including interests, skills, goals, daily routines, likes and dislikes, motivation, context, Exploring Contexts and End-User Needs and needs and desires. Teams were asked to translate multiple We held a 2-day meeting in March 2018 and convened leaders conversations and observations into a representative set of from the Arthritis Foundation, CARRA, PR-COIN, and 3 to 5 persona characteristics; however, some teams used real life parent and clinical members from each of the pilot site teams. individuals for their personas. The meeting included working sessions for brainstorming, https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 3 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al also indicated their top 5 elements for aggregate reviews as a Journey Mapping cross-check against the rankings. After the second round of The parent partner advisory group participated in a journey voting, the domain containing self-management and other user mapping exercise [21] intended to capture the patient and family features was removed from the final round of voting, as it was lived experience in the care journey. Journey mapping described determined that the patient and family-facing self-management “walking through a visit”—from preparing for the visit at home, tool was outside the initial scope of the point-of-care dashboard. arriving at the clinic, moving through the clinic visit, and checking out to following up afterward. Parent partners In the third and final round of voting, team members were asked described actions, questions that needed answering, happy to prioritize the data elements based on modified MoSCoW moments (things that improved the care experience), and pain (must have, should have, could have, will not have) criteria points (frustrations and annoyances) for each step in the care [25]: must have, nice to have, will not have (but nice someday), process. The aim was to consider how to leverage happy and not a priority. After the results from the third round of voting moments and understand how to improve pain points in were tallied, a broader group of stakeholders—clinician advisory designing the dashboard innovation. group, parent partner advisory group, and CARRA and PR-COIN registry leaders—were engaged in reviewing and Dashboard Sketches offering feedback before the dashboard data elements were Teams engaged in a visual thinking exercise designed to finalized. generate ideas for dashboard design and invite commentary Specific measures or tools for each PRO data element were [24]. Each team member was instructed to draw a picture of reconciled and aligned with the data collection for the CARRA their ideal dashboard, review and discuss it with their team, and [12] and PR-COIN [26] registries, with the goal of data collected compare and consolidate the best ideas to create a team once and used for multiple purposes. In addition, measures or dashboard. Similarities and differences across team sketches tools validated for use in pediatric rheumatology were identified were noted and discussed during the co-design session. as preferable. Site Visits Low-Tech Dashboard Testing and Design Iteration The Dartmouth Institute for Health Policy and Clinical Practice Sites engaged in testing a paper-based version of the dashboard team conducted a site visit at each pilot site to engage key with a small number of clinical patients and families using the stakeholders (team members, local leadership and informatics Plan-Do-Study-Act framework [27]. The aim of rapid-cycle teams, and patients and families) in the dashboard design process testing was to assess the feasibility and utility of the dashboard and to observe clinical operations and care flows to better at the point of care and to incorporate feedback to iteratively understand the context and workflow of the dashboard. They refine and enhance the dashboard design and usability within met with patients and families (n=12) in individual and group the flow of care. settings to provide an overview of the dashboard initiative and capture their feedback and ideas for enhancing the information The dashboard prototype was created using a Microsoft Excel environment at the point of care. [28] template to display patient-reported data and key clinical data obtained from patients completing previsit questionnaires Building Consensus and the EHR. It was introduced to patients with JIA and their After exploring how a dashboard could support the needs and families by a rheumatology clinician. Parents were surveyed requirements of patients, families, clinicians, and care teams after the visit to rate their overall impressions of the prototype for use during clinic visits, teams engaged in determining the dashboard. Clinicians were also surveyed regarding their detailed design requirements for the dashboard. This process experiences with the dashboard. included finalizing the data elements, layout, and visual look Following low-tech testing, a third-party digital health solution and feel of the dashboard, and considering features to support organization was engaged to translate the findings from the self-management and other user needs. human-centered design process into a final wireframe of the Delphi Voting on Dashboard Data Elements dashboard design. Iterative design sessions were held to obtain Clinical care team members, patients, and parents participated feedback based on the preferences of the patients, families, in a Delphi voting process via web-based surveys and multisite clinicians, and care teams. team meetings to achieve consensus on a parsimonious set of data elements to be displayed on the dashboard. An initial list Results of data elements and dashboard features was compiled based on personas, dashboard sketches, and discussions with patients, Insights From Contexts and End-User Needs families, clinicians, and care teams during pilot site design Human-centered design activities demonstrated the needs of sessions and site visits. Teams were also asked to review the end users and the processes required to integrate a dashboard list and suggest additional items that might be missing. into the flow of clinical care. This iterative framework generated ideas and insights about the features and functionalities that are Dashboard elements were organized by domain in preparation most important to the design of the dashboard. Several notable for the 3 rounds of Delphi voting. The domains included PROs, themes emerged from iterative discussions between the project clinical data, medications, self-management, and other user facilitators and co-design teams throughout the co-design features. In the first 2 rounds, team members ranked the process: (1) the right data, in the right place, at the right time, elements within each domain using a 5-point Likert scale. They https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 4 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al (2) data in once for multiple purposes, (3) patient and family Making decisions about treatment plans and self-management components, and (4) opportunity for education medications is complex and involves weighing and increased transparency. pros/cons...need enough/sufficient information but not too overwhelming. [Clinician: multisite team The Right Data, in the Right Place, at the Right Time meeting] The EHR serves as a cumulative repository of the data and Trending data over time (including medication usage) was information generated at each clinical encounter. Pilot site teams identified as an essential functionality and included in all team stressed they did not want to replicate the EHR and instead dashboard sketches (Figure 2): arrived at a balance of data to support the coproduction of care: I would like to know how she is progressing better or worse over time. [Parent persona] Figure 2. Example dashboard sketch. cJADAS: clinical juvenile arthritis disease activity score; PGA: physician global assessment. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 5 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al In addition, the teams expressed a desire to personalize the Patient and Family Self-management Components dashboard with a patient photo and updates on life between Personas developed for this project, such as the example in visits: Figure 3, provide insight into patient and family needs in managing chronic diseases. Families of children and teenagers We normally just see snapshots of patients in clinics; with JIA desire a place to collect, track, and review disparate it would be great to have a bigger picture of what pieces of information and data needed to optimize the goes on in our patients’ lives on a day-to-day basis. management of their child’s health: [Clinician: multisite team meeting] I am looking forward to one place where my son’s Data in Once for Multiple Purposes health information is all in one place for me to see. A frustration identified by patients and families during the [Parent persona] journey mapping exercise was being asked the same questions A space for children and teenagers with JIA to self-report on repeatedly during a visit as well as completing questionnaires activities or symptoms important to them, a to-do list, and a and then not seeing the results or understanding how the data medication tracker were cited as desirable self-management were being used: features: A goal is to have information that gets shared actually I would like a way to keep track of how I feel mentally get to the provider—by the time we get to the and physically in between visits so that I can let my clinician, only 10% of what we’ve shared at every doctor know, especially since my visits are spread step of the visit process actually gets to the doctor. out. [Patient persona] [Parent: 2-day kick-off meeting] Furthermore, during the co-design sessions, parents shared the In addition, clinicians discovered that the collection of PROs information that they routinely collected to prepare for a clinic typically occurred toward the end of the visit, with a research visit, including laboratory work required and completed, coordinator collecting the data for research registry purposes. questions and updates to share with the physician, and the date Teams agreed that an important design specification would be of their child’s last eye examination. They expressed the need to ensure that previsit questionnaire data both inform the clinic to have this information centrally available for previsit planning. visit and populate registries. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 6 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al Figure 3. Parent persona. on the dashboard. Clinicians and care team members assured Opportunity for Patient Education and Increased parents that they always reviewed alanine aminotransferase Transparency scores as part of every visit; however, they deferred to parent Involving patients and parents alongside clinicians and care preference to include it on the dashboard. Similarly, patients teams during the design process offered each group unique and parents were unaware of measures used for clinical insight into the data and information most important to each in assessment, such as the Juvenile Arthritis Disease Activity Score coproducing care. For example, parents were particularly (JADAS) [29]. Clinicians admitted that they did not typically concerned about medication side effects and lobbied to include explain the clinical and research importance of the JADAS, a laboratory measure of liver toxicity (alanine aminotransferase) acknowledging that the dashboard would offer an opportunity https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 7 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al for education and increased transparency with patients and included PROs, key clinical data, and current and past families: medications. The initial round of voting started with 25 data elements: 13 in the PRO domain, 11 in the clinical data domain, We would like to spend less time charting and dealing and 1 associated with medications. After 3 rounds of voting, a with insurance companies and more time with our consensus was reached on the 11 data elements summarized in patients on education and management of the disease, Textbox 1. ensuring that we/they have a true understanding of their medical condition and treatments, daily life, and Data elements that were initially considered, but did not achieve coping strategies. We want to promote self-reliance consensus, included fatigue, morning stiffness, mental health, and self-management. [Clinician persona] uveitis status, and several laboratory values (C-reactive protein, erythrocyte sedimentation rate, and aspartate aminotransferase). Consensus on Dashboard Design Finalized Set of Data Elements The Delphi method was used to reach consensus on the final set of dashboard data elements. The necessary data domains Textbox 1. Final dashboard data elements. Patient-reported outcomes Concerns, questions: free-text patient, parent, and family questions or concerns for discussion in the visit Patient global assessment: ordinal 0-10 scale, patient’s assessment of overall well-being Physical function: Patient Reported Outcomes Measurement Information System (PROMIS) v1.0 Pediatric Upper Extremity short form raw summed score; PROMIS v1.0 Pediatric Mobility short form raw summed score Pain, pain interference: ordinal 0-10 current rating of pain and PROMIS v1.0 Pain Interference Short Form raw summed score Medication adherence: 5-point Likert scale that indicates how often medications are being taken as prescribed and includes the option of “I am not currently taking any prescribed rheumatology medications.” Medication side effects: list of symptoms experienced with current medications Clinical data Joint count: total number of tender joints and total number of swollen joints Provider global assessment: ordinal 0-10 scale (provider’s assessment of patient’s overall disease activity) Disease activity (Juvenile Arthritis Disease Activity Score): 0-30 composite score that incorporates patient global assessment, provider global assessment, and joint count Liver toxicity: alanine aminotransferase Medications Medications: medication name, dose, route, start and stop dates, and frequency positive (Figures 5 and 6), with 89% (8/9) to 100% (9/9) of Low-Tech Testing and Design Iteration parents and 80% (8/10) to 90% (9/10) of clinicians strongly The paper-based prototype (Figure 4) was tested with 36 patients agreeing or agreeing that the dashboard (1) was useful during with JIA (aged 3-20 years; 24/36, 67% female) during a clinical clinical discussions, (2) helped to talk about what mattered most, visit. Parent (n=9) and clinician (n=10) feedback was very and (3) helped to make health care decisions. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 8 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al Figure 4. Paper-based dashboard prototype. cJADAS10: 10-joint clinical juvenile arthritis disease activity score. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 9 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al Figure 5. Dashboard low-tech testing: parent feedback (n=9). Figure 6. Dashboard low-tech testing: clinician feedback (n=10). Low-tech testing also uncovered important insights about the global, and disease activity score), and the visualization of data value of the dashboard, including the ability of patients and over time to help make decisions. Although many PRO measures parents to share questions and concerns in advance of the visit, are still being validated for clinical use [30], patients and greater transparency in clinical assessment data routinely families are interested in seeing their scores in real time [31] collected by clinicians and care teams (eg, joint count, physician and comparing them with past visits. The dashboard designs https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 10 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al were iterated to include these elements and to improve the visual real-time basis to include the current visit’s clinical assessment interface throughout the study. data as an important element of visualizing progress over time and engaging in shared decision-making, (2) clearly labeling Parents reported that being asked in advance about what they the graphs for ease of reading and interpretation given varying wanted to discuss most prevented them from forgetting anything scales of the data elements, and (3) orientation of the flow during the visit. Clinicians appreciated understanding patient vertically to facilitate review and discussion. and parent concerns and ensured that these questions or concerns were addressed. One clinician shared an experience of how the The final dashboard design wireframe is illustrated in Figure 7. responses highlighted the specific concerns of both the patient Three sections of the dashboard emerged: (1) patient and parent (scared and did not want to restart medications) and his parents and family questions and concerns about the visit, (2) a snapshot (concerned about setbacks from their child’s flare), setting the of how the patient is currently doing, and (3) a trends section framework for the visit. Another clinician reported, “We often that longitudinally displays PROs, clinical data, and medications forget to ask certain questions, and the dashboard reminds us and reported side effects. The layout is intended to correspond to focus on the patient’s concerns rather than just looking at a to the clinical workflow. The top two sections provide the clinical picture.” clinician with initial insight into the patient and family needs and how the patient is currently feeling, allowing for more rapid Feedback on the usability of the paper-based prototype also movement into the core of the visit. The trends section is yielded considerations for the dashboard design and data display, intended for review after data from the clinical assessment have including (1) ensuring that the dashboard is updated on a been captured and updated in real time. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 11 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al Figure 7. Final dashboard design wireframe. context of use and needs of end users, obtaining consensus on Discussion necessary data elements, and constructing a display prototype. Notable themes included the right data, in the right place, at the Principal Findings right time; data in once for multiple purposes; patient and family This study used human-centered design principles to involve self-management components; and opportunity for education parents, patients, clinicians, and care team members in the and increased transparency. A final set of 11 dashboard data development of a coproduction of care dashboards for clinical elements was identified, including PROs, clinical data, and use in 4 diverse ambulatory pediatric rheumatology clinics medications. Important design considerations include the across the United States. This process included evaluating the incorporation of real-time data, clearly labeled graphs, and https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 12 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al vertical orientation to facilitate reviews and discussions. (physician global assessment, tender and swollen joint count, Prototype paper-testing with 36 patients and families yielded and patient global assessment) to promote greater understanding positive feedback about the dashboard’s usefulness during clinic by patients and families regarding how this score is derived and discussions, helped to talk about what mattered most, and used. Finally, and most notably, our set includes an informed health care decision-making. agenda-setting question and questions regarding medication adherence and possible side effects to prompt discussion about Key components of the dashboard display included PROs, medication intolerance, which can have a significant impact on clinical data, and medications; all trended longitudinally with quality of life [34]. clearly labeled graphics and plans for real-time updates. Interestingly, a previsit agenda-setting question to be asked of Strengths and Limitations both patients and families for “Questions or Concerns?” is The strengths of our study include integrating patients and deemed an important component of patient-centered care. This parents as full members of the pilot site teams, employing a is consistent with findings in other coproduction projects in variety of activities to gain insight into the needs of end users, which patient and family questions and concerns helped to focus and collecting qualitative and quantitative data to achieve the content of the visits and prioritize what matters most to them consensus on a dashboard design. We used rapid-cycle iterative [4,6]. In addition, our final dashboard prototype is similar to testing of a paper dashboard to simulate how a dashboard might dashboards developed for adult RA [19] in their longitudinal work to support the coproduction cycle of (1) coassessing the presentation of PRO and clinical data along with medications, patient’s current health status, (2) codeciding the next steps, (3) intended to enhance communication about how well medications co-designing the care plan, and (4) codelivering care [35]. work to improve patient symptoms, functioning, and disease Although this study highlights the importance of involving end activity. users in the design process, we acknowledge several potential Notably, all teams agreed that data collection should be limitations in our approach. We leveraged highly engaged streamlined and used for clinical care, collaborative clinical sites, care teams, and patients and families and used improvement networks [13], and research, an important step convenience sampling for development and testing; therefore, toward the development of an integrated and sustainable learning the perspectives we gained may not be representative of all health system [32]. Our prototype design encompasses the pediatric rheumatology practices or populations. We engaged framework of having the right data at the right time to foster 4 diverse clinical sites, including small and large centers, in enhanced communication and collaboration during a clinical various locations across the United States. As we proceed to encounter and emphasizes the need for streamlined data the next phase of building an electronic version of the dashboard, collection to support multiple purposes and uses. Many of the we will have the opportunity to test the dashboard and assess dashboard data elements (functional status, pain score, patient its usability and utility across a larger target population. Another global, joint count, and JADAS) were congruent with data limitation was the inability to pursue the design of a patient and collected within the CARRA [12] and PR-COIN [26] registries, family self-management tool. Patients and families expressed as well as the Canadian JIA research network [33]. An a strong desire to have a tool for individualized daily symptom opportunity exists to integrate these clinical care data with those tracking and note-taking to capture their experiences of living required for research and quality improvement purposes. This with a chronic disease. We acknowledge the importance of these integration represents a core pillar of building a learning health functionalities [36]; however, the technological requirements system [32] and allows for reduced burden on patients and for integrating them as part of a point-of-care dashboard were families and more efficient data usage and optimization. determined to be beyond the initial scope and capabilities of Although our design is a paper prototype with an associated our study. wireframe, the long-term goal is to develop an electronic Conclusions dashboard integrated within the EHR. Notably, because all institutions use the same EHR, we anticipate that the use of We used a human-centered design process to actively engage standardized data mapping will facilitate interoperability among patients with JIA, families, clinicians, and care teams to research networks. successfully create a blueprint for a point-of-care coproduction dashboard to foster meaningful conversations and shared Although prior work has been completed on dashboards in decision-making about care and treatment plans. The necessary rheumatology [17,19], our study is unique from these published dashboard data elements include PROs, clinical data, and works in several notable ways. First, our study, which focused medications, and the display should use real-time data, have on the population with JIA, included 4 pediatric rheumatology clearly labeled graphs, and a vertical orientation. Data capture teams, including patients and parents as team members, from that supports clinical care and research and improvement efforts diverse geographic locations who worked collaboratively is ideal. Results from dashboard testing indicated that it was throughout the co-design process. We also deployed a variety useful during clinical discussions, helped to talk about what of human-centered design activities, including process mapping, mattered most, and informed health care decision-making. personas, journey mapping, dashboard sketches, and observations. Third, our final set of dashboard data elements Future study efforts informed by this work and planned by the was greater than that of the adult population with RA [17,19]. authors include (1) creating an electronic version of the Although both the adult and pediatric rheumatology dashboard point-of-care dashboard, (2) preparing for a successful launch data sets include a composite disease activity score, our teams through workflow integration and patient and family education felt that it was important to include component measures https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 13 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al efforts, (3) testing and implementing the dashboard at the 4 formative evaluation of its usability and utility in supporting pediatric rheumatology pilot sites, and (4) conducting a coproduction of care. Acknowledgments The authors wish to thank all patients and their families for their time and commitment to participating in the dashboard co-design efforts, including Laura Curtis, Jennifer Danielson, Nick Kim, Cathy Kuncken, Dylan Kuncken, Rochelle Lentini, Robert Shelton, Sonya Shelton, Robin Soler, and Kirsten Wilder. They would also like to thank the health care professionals who participated in various phases of this study and displayed their passion to improve care for their patients with juvenile idiopathic arthritis, including Tracie Conrad, Quoc Du, Sarah Hunt, Ivy Hernandez-Jones, Maria Martinez, Melissa Roybal, Marielena Vallejo, and Lauren Vannoy. The authors would also like to thank Jake Casale for his thoughtful and innovative input and tireless commitment during the co-design process. The authors would like to acknowledge all participating pediatric rheumatology practices for embarking on this journey: Hackensack University Medical Center, Stanford Children’s Health, University of California San Francisco, and Wake Forest Baptist Brenner Children’s Hospital. The authors are grateful to the Arthritis Foundation and Ann Palmer, Guy Eakin, Suzanne Schrandt, and Laura Marrow for their steadfast support of this important work dedicated to bringing the voice of the patient and family into the point of care. Conflicts of Interest None declared. References 1. Batalden M, Batalden P, Margolis P, Seid M, Armstrong G, Opipari-Arrigan L, et al. Coproduction of healthcare service. BMJ Qual Saf 2016;25(7):509-517 [FREE Full text] [doi: 10.1136/bmjqs-2015-004315] [Medline: 26376674] 2. Schoemaker CG, Swart JF, Wulffraat NM. Treating juvenile idiopathic arthritis to target: what is the optimal target definition to reach all goals? Pediatr Rheumatol Online J 2020;18(1):34 [FREE Full text] [doi: 10.1186/s12969-020-00428-7] [Medline: 32299430] 3. Ravelli A, Consolaro A, Horneff G, Laxer RM, Lovell DJ, Wulffraat NM, et al. Treating juvenile idiopathic arthritis to target: recommendations of an international task force. Ann Rheum Dis 2018;77(6):819-828. [doi: 10.1136/annrheumdis-2018-213030] [Medline: 29643108] 4. Van Citters AD, Gifford AH, Brady C, Dunitz JM, Elmhirst M, Flath J, et al. Formative evaluation of a dashboard to support coproduction of healthcare services in cystic fibrosis. J Cyst Fibros 2020;19(5):768-776. [doi: 10.1016/j.jcf.2020.03.009] [Medline: 32354650] 5. Opipari-Arrigan L, Dykes DM, Saeed SA, Thakkar S, Burns L, Chini BA, et al. Technology-enabled health care collaboration in pediatric chronic illness: pre-post interventional study for feasibility, acceptability, and clinical impact of an electronic health record-linked platform for patient-clinician partnership. JMIR Mhealth Uhealth 2020;8(11):e11968 [FREE Full text] [doi: 10.2196/11968] [Medline: 33242014] 6. Van Citters AD, Holthoff MM, Kennedy AM, Melmed GY, Oberai R, Siegel CA, et al. Point-of-care dashboards promote coproduction of healthcare services for patients with inflammatory bowel disease. Int J Qual Health Care 2021;33(Supplement_2):ii40-ii47. [doi: 10.1093/intqhc/mzab067] [Medline: 34849970] 7. Mielants H, Veys EM, Maertens M, Goemaere S, De Clercq L, Castro S, et al. Prevalence of inflammatory rheumatic diseases in an adolescent urban student population, age 12 to 18, in Belgium. Clin Exp Rheumatol 1993;11(5):563-567. [Medline: 8275595] 8. Danner S, Sordet C, Terzic J, Donato L, Velten M, Fischbach M, et al. Epidemiology of juvenile idiopathic arthritis in Alsace, France. J Rheumatol 2006;33(7):1377-1381. [Medline: 16821272] 9. Rumsey DG, Guzman J, Rosenberg AM, Huber AM, Scuccimarri R, Shiff NJ, Research in Arthritis in Canadian Children Emphasizing Outcomes Investigators. Worse quality of life, function, and pain in children with enthesitis, irrespective of their juvenile arthritis category. Arthritis Care Res (Hoboken) 2020;72(3):441-446. [doi: 10.1002/acr.23844] [Medline: 30740939] 10. Seid M, Huang B, Niehaus S, Brunner HI, Lovell DJ. Determinants of health-related quality of life in children newly diagnosed with juvenile idiopathic arthritis. Arthritis Care Res (Hoboken) 2014;66(2):263-269 [FREE Full text] [doi: 10.1002/acr.22117] [Medline: 23983144] 11. Oen K, Guzman J, Dufault B, Tucker LB, Shiff NJ, Duffy KW, the Research in Arthritis in Canadian Children emphasizing Outcomes (ReACCh-Out) investigators. Health-related quality of life in an inception cohort of children with juvenile idiopathic arthritis: a longitudinal analysis. Arthritis Care Res (Hoboken) 2018;70(1):134-144. [doi: 10.1002/acr.23236] [Medline: 28320056] https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 14 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al 12. Beukelman T, Kimura Y, Ilowite NT, Mieszkalski K, Natter MD, Burrell G, CARRA Registry Investigators. The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months. Pediatr Rheumatol Online J 2017;15(1):30 [FREE Full text] [doi: 10.1186/s12969-017-0160-6] [Medline: 28416023] 13. Harris JG, Bingham CA, Morgan EM. Improving care delivery and outcomes in pediatric rheumatic diseases. Curr Opin Rheumatol 2016;28(2):110-116 [FREE Full text] [doi: 10.1097/BOR.0000000000000257] [Medline: 26780426] 14. Ringold S, Angeles-Han ST, Beukelman T, Lovell D, Cuello CA, Becker ML, et al. 2019 American college of rheumatology/arthritis foundation guideline for the treatment of juvenile idiopathic arthritis: therapeutic approaches for non-systemic polyarthritis, sacroiliitis, and enthesitis. Arthritis Care Res (Hoboken) 2019;71(6):717-734 [FREE Full text] [doi: 10.1002/acr.23870] [Medline: 31021516] 15. Lundberg V, Sandlund M, Eriksson C, Janols R, Lind T, Fjellman-Wiklund A. How children and adolescents with juvenile idiopathic arthritis participate in their healthcare: health professionals' views. Disabil Rehabil (forthcoming) 2020:1-8. [doi: 10.1080/09638288.2020.1811406] [Medline: 32875956] 16. Ovretveit J, Keller C, Hvitfeldt Forsberg H, Essén A, Lindblad S, Brommels M. Continuous innovation: developing and using a clinical database with new technology for patient-centred care--the case of the Swedish quality register for arthritis. Int J Qual Health Care 2013;25(2):118-124. [doi: 10.1093/intqhc/mzt002] [Medline: 23360809] 17. Nelson EC, Dixon-Woods M, Batalden PB, Homa K, Van Citters AD, Morgan TS, et al. Patient focused registries can improve health, care, and science. BMJ 2016;354:i3319 [FREE Full text] [doi: 10.1136/bmj.i3319] [Medline: 27370543] 18. Newman ED, Lerch V, Billet J, Berger A, Kirchner HL. Improving the quality of care of patients with rheumatic disease using patient-centric electronic redesign software. Arthritis Care Res (Hoboken) 2015;67(4):546-553 [FREE Full text] [doi: 10.1002/acr.22479] [Medline: 25417958] 19. Ragouzeos D, Gandrup J, Berrean B, Li J, Murphy M, Trupin L, et al. "Am I OK?" using human centered design to empower rheumatoid arthritis patients through patient reported outcomes. Patient Educ Couns 2019;102(3):503-510 [FREE Full text] [doi: 10.1016/j.pec.2018.10.016] [Medline: 30446358] 20. Liu LH, Garrett SB, Li J, Ragouzeos D, Berrean B, Dohan D, et al. Patient and clinician perspectives on a patient-facing dashboard that visualizes patient reported outcomes in rheumatoid arthritis. Health Expect 2020;23(4):846-859 [FREE Full text] [doi: 10.1111/hex.13057] [Medline: 32270591] 21. Stickdorn M, Schneider J. This is service design thinking: basics, tools, cases. Hoboken, NJ: Wiley; 2011. 22. Quality improvement essentials toolkit. Institute for Healtcare Improvement. 2017. URL: http://www.ihi.org/resources/ Pages/Tools/Quality-Improvement-Essentials-Toolkit.aspx [accessed 2021-08-03] 23. Goodwin K. Designing for the digital age: how to create human-centered products and services. Indianapolis, IN: Wiley; 24. Rhode M. Sketching: the visual thinking power tool. A List Apart. 2011. URL: https://alistapart.com/article/ sketching-the-visual-thinking-power-tool/ [accessed 2021-08-03] 25. Clegg D, Barker R. Case method fast track: a rad approach. Boston, MA: Addison-Wesley Professional; 1994. 26. Harris J, Morgan E, Vora S, Gilbert M, Yildirim-Toruner C, Griffin N, et al. New juvenile idiopathic arthritis quality measure set for the pediatric rheumatology care and outcomes improvement network. In: 2020 ACR Pediatric Rheumatology Symposium. 2020 Presented at: ACR Convergence '20; November 5-9, 2020; Virtual p. 179. [doi: 10.1136/annrheumdis-2019-eular.4395] 27. Langley GJ, Moen RD, Nolan KM, Nolan TW, Norman CL, Provost LP. The improvement guide: a practical approach to enhancing organizational performance. 2nd edition. San Francisco, CA: Jossey-Bass; 2009. 28. Microsoft Excel for Mac. Microsoft Corporation. 2021. URL: https://apps.apple.com/us/app/microsoft-excel/ id462058435?mt=12 [accessed 2021-08-03] 29. Consolaro A, Giancane G, Schiappapietra B, Davì S, Calandra S, Lanni S, et al. Clinical outcome measures in juvenile idiopathic arthritis. Pediatr Rheumatol Online J 2016;14(1):23 [FREE Full text] [doi: 10.1186/s12969-016-0085-5] [Medline: 27089922] 30. Mann CM, Schanberg LE, Wang M, von Scheven E, Lucas N, Hernandez A, et al. Identifying clinically meaningful severity categories for PROMIS pediatric measures of anxiety, mobility, fatigue, and depressive symptoms in juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus. Qual Life Res 2020;29(9):2573-2584. [doi: 10.1007/s11136-020-02513-6] [Medline: 32410143] 31. Hersh AO, Salimian PK, Weitzman ER. Using patient-reported outcome measures to capture the patient's voice in research and care of juvenile idiopathic arthritis. Rheum Dis Clin North Am 2016;42(2):333-346 [FREE Full text] [doi: 10.1016/j.rdc.2016.01.004] [Medline: 27133493] 32. Institute of Medicine (US) Roundtable on Evidence-Based Medicine. In: Olsen L, Aisner D, McGinnis JM, editors. The learning healthcare system: workshop summary. Washington, D.C: National Academic Press (US); 2007. 33. Barber CE, Twilt M, Pham T, Currie GR, Benseler S, Yeung RS, et al. A Canadian evaluation framework for quality improvement in childhood arthritis: key performance indicators of the process of care. Arthritis Res Ther 2020;22(1):53 [FREE Full text] [doi: 10.1186/s13075-020-02151-w] [Medline: 32192528] https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 15 (page number not for citation purposes) XSL FO RenderX JOURNAL OF PARTICIPATORY MEDICINE Taxter et al 34. Weitzman ER, Wisk LE, Salimian PK, Magane KM, Dedeoglu F, Hersh AO, et al. Adding patient-reported outcomes to a multisite registry to quantify quality of life and experiences of disease and treatment for youth with juvenile idiopathic arthritis. J Patient Rep Outcomes 2018;2:1 [FREE Full text] [doi: 10.1186/s41687-017-0025-2] [Medline: 29645010] 35. Elwyn G, Nelson E, Hager A, Price A. Coproduction: when users define quality. BMJ Qual Saf 2020;29(9):711-716 [FREE Full text] [doi: 10.1136/bmjqs-2019-009830] [Medline: 31488570] 36. Cai RA, Beste D, Chaplin H, Varakliotis S, Suffield L, Josephs F, et al. Developing and evaluating JIApp: acceptability and usability of a smartphone app system to improve self-management in young people with juvenile idiopathic arthritis. JMIR Mhealth Uhealth 2017;5(8):e121 [FREE Full text] [doi: 10.2196/mhealth.7229] [Medline: 28811270] Abbreviations CARRA: Childhood Arthritis and Rheumatology Research Alliance EHR: electronic health record JADAS: Juvenile Arthritis Disease Activity Score JIA: juvenile idiopathic arthritis MoSCoW: must have, should have, could have, will not have PR-COIN: Pediatric Rheumatology Care and Outcomes Improvement Network PRO: patient-reported outcome RA: rheumatoid arthritis US: United States Edited by S Woods, M Hudson; submitted 05.11.21; peer-reviewed by A Oostdyk, S Badawy; comments to author 12.12.21; revised version received 09.01.22; accepted 08.02.22; published 22.04.22 Please cite as: Taxter A, Johnson L, Tabussi D, Kimura Y, Donaldson B, Lawson E, Del Gaizo V, Vitelli D, Pinter C, Van Citters A, Nelson E, Lee Co-design of an Electronic Dashboard to Support the Coproduction of Care in Pediatric Rheumatic Disease: Human-Centered Design and Usability Testing J Particip Med 2022;14(1):e34735 URL: https://jopm.jmir.org/2022/1/e34735 doi: 10.2196/34735 PMID: 35133283 ©Alysha Taxter, Lisa Johnson, Doreen Tabussi, Yukiko Kimura, Brittany Donaldson, Erica Lawson, Vincent Del Gaizo, Daniela Vitelli, Corinne Pinter, Aricca Van Citters, Eugene Nelson, Tzielan Lee. Originally published in Journal of Participatory Medicine (https://jopm.jmir.org), 22.04.2022. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in Journal of Participatory Medicine, is properly cited. The complete bibliographic information, a link to the original publication on https://jopm.jmir.org, as well as this copyright and license information must be included. https://jopm.jmir.org/2022/1/e34735 J Particip Med 2022 | vol. 14 | iss. 1 | e34735 | p. 16 (page number not for citation purposes) XSL FO RenderX

Journal

Journal of Participatory MedicineJMIR Publications

Published: Apr 22, 2022

Keywords: human-centered design; coproduction; dashboard; pediatric rheumatology; juvenile idiopathic arthritis; JIA; juvenile arthritis; patient centered; patient-reported outcomes; patient communication; patient education; family education

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