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An environmental scan of shared access to patient portals

An environmental scan of shared access to patient portals Abstract We sought to understand the comprehensiveness of consumer-oriented information describing the availability of shared access to adult patient portals from publicly reported information on institutional websites of 20 large and geographically diverse health systems. All 20 health systems reported that they offer patients the ability to share access to their patient portal account with a family member or friend; however, the comprehensiveness of information regarding registration procedures, features, and terminology varied widely. Half of the systems (n = 10) reported having shared access available on their patient portal registration webpage. Few systems (n = 2) reported affording patients the ability to differentiate specific role-based privileges. No systems reported uptake of shared access among adult patients, which was variably described as “proxy,” “caregiver,” “parental,” or “delegate” access. Findings suggest that engaging families through health information technology will require greater efforts to promote awareness and differentiate privileges that respect patients’ choice and control in information-sharing preferences. health information technology, electronic health records, family caregivers INTRODUCTION The patient portal is a personal health record that is tethered to an electronic health record through which patients may view their health information and perform health management tasks electronically. Although the patient portal is a valuable strategy for engaging patients in their care,1,2 not all patients have access to or are capable of using a computer or mobile device to manage their health.3,4 Individuals who are older, with lower educational attainment, impaired cognitive function, and more limited technology experience are less likely to use a patient portal5,6 and are less able to perform health management tasks electronically.7,8 It is parents who generally assume responsibility for digital health system interactions in pediatric medicine. Some health systems allow adult patients to explicitly “share” access to their patient portal account with a family member or friend “care partner” through a registration process in which the care partner is provided with his or her own identity credentials (login and password). There are theoretical and practical reasons to believe that shared access could improve care, especially for patients who are more vulnerable, many of whom rely on and desire help from others.9,10 Indeed, emerging evidence finds that care partners who have been authorized to access patient portal accounts are comparatively better educated, more confident in their ability to manage aspects of patient health, and more frequent users of health information technology than adult patients.11 Interventional studies suggest that there is clinical benefit from proactively engaging care partners through health information technology.12–15 A foundational step to engaging patients and care partners through consumer health information technology is promoting awareness of the availability and process through which technologies can be accessed. However, no study to date has examined how health systems communicate information about the availability of shared access to the public, or how they have approached the implementation of shared access registration and functionality. Therefore, we conducted an environmental scan of publicly reported information on the institutional websites of 20 geographically diverse health care delivery systems located in the United States to determine the availability of information about and features of shared access functionality to the patient portal. METHODS We conducted an environmental scan to assess the availability, functionality, and registration processes for shared access to patient portal accounts at 20 academic or not-for-profit health care delivery systems. We included regional centers of excellence and sought to achieve a relatively balanced distribution of systems by geographic region. Drawing on our prior work to date,9,11 we developed a data abstraction tool to delineate pertinent features of patient portal functionality for each system. Information was extracted from consumer-oriented information reported on each system’s institutional website between July 2016 and February 2017. Abstraction of information was independently performed by 2 coauthors, and disagreements were discussed and resolved by the study team. For each health system, we abstracted information about the electronic health record vendor in use, the number of patients who were reported as having registered for the portal, the availability of shared access to the patient portal by patient age group (ie, children, adolescents, adults), the term used to describe shared access for adult patients (“caregiver,” “proxy,” “delegate”), and whether the availability of shared access was specifically mentioned on the registration page for the patient portal (yes/no). Information about shared access registration procedures for care partners of adult patients included: mode of registration (online, mail/fax, in person), number of care partners who may be registered for a patient’s portal account, and duration of shared access. Information regarding the functionality of shared access included degree of granularity (full vs partial access to features) and care partners’ ability to view secure messaging between adult patients and their providers. We additionally assessed the comprehensiveness of information and note elements for which information was not reported. The identity of each health system has been anonymized. RESULTS Health care delivery systems were geographically located in the Northeast (n = 4), Southeast (n = 3), Southwest (n = 1), Midwest (n = 3), Mid-Atlantic (n = 1), and West (n = 8) and primarily relied on 2 electronic health record vendors (Table 1). All 20 systems described operating a consumer-facing patient portal on their institutional website. More than half (n = 12) of the health care delivery systems reported the number of registered patient portal users; the user base varied widely from 13 000 to 5.2 million. No systems reported the proportion or number of patients who had authorized one or more care partners with access to their patient portal account. Table 1. Availability and features of shared access to the patient portal at 20 health care delivery systems Characteristics of System   Availability by Age Group   Available Information About Shared Access to Patients     Region  Vendor  User Base  Parent  Adolescent (<18)  Adult (18+)  Name of Access  Described on Registration Page  1  West  Vendor A  5 200 000  <12  Yes, limited  Yes  Caregiver  Yes  2  Northeast  Vendor A  240 000  <14  Yes  Yes  Caregiver  Yes  3  Southeast  In-housea  142 000  <13  Yes  Yes  Delegate  Yes  4  Mid-Atlantic  Vendor A  267 000  <13  Yes, limited  Yes  Proxy  No  5  Midwest  Vendor Ba  330 000  <13  Yes, limited  Yesb  c  No  6  West  Vendor A  c  <13  c  No  Parentalc  No  7  West  Vendor A  1 000 000  <12  Yes, limited  Yes  Proxy  Yes  8  Midwest  Vendor A  13 000  <13  Yes  Yes  Proxy  No  9  Northeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  10  Southeast  Vendor A  396 000  <12  Yes, limited  Yes  Proxy  No  11  West  Vendor B  c  <12  Yes, limited  Yes  Proxy  No  12  West  Vendor A  c  <14  Yes, limited  Yes  Proxy  Yes  13  West  Vendor A  25 500  <12  Yes, limited  Yesb  Caregiver  Yes  14  Northeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  Yes  15  West  Vendor B  100 000  <13  No  No  c  No  16  Midwest  Vendor A  2 100 000  <18  Yes  Yes  Caregiver  Yes  17  Northeast  Vendor A  239 800  <13  Yes, limited  Yes  Proxy  Yes  18  West  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  19  Southeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  20  Southwest  Vendor A  c  <14  Yes, limited  Yes  Proxy  Yes  Characteristics of System   Availability by Age Group   Available Information About Shared Access to Patients     Region  Vendor  User Base  Parent  Adolescent (<18)  Adult (18+)  Name of Access  Described on Registration Page  1  West  Vendor A  5 200 000  <12  Yes, limited  Yes  Caregiver  Yes  2  Northeast  Vendor A  240 000  <14  Yes  Yes  Caregiver  Yes  3  Southeast  In-housea  142 000  <13  Yes  Yes  Delegate  Yes  4  Mid-Atlantic  Vendor A  267 000  <13  Yes, limited  Yes  Proxy  No  5  Midwest  Vendor Ba  330 000  <13  Yes, limited  Yesb  c  No  6  West  Vendor A  c  <13  c  No  Parentalc  No  7  West  Vendor A  1 000 000  <12  Yes, limited  Yes  Proxy  Yes  8  Midwest  Vendor A  13 000  <13  Yes  Yes  Proxy  No  9  Northeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  10  Southeast  Vendor A  396 000  <12  Yes, limited  Yes  Proxy  No  11  West  Vendor B  c  <12  Yes, limited  Yes  Proxy  No  12  West  Vendor A  c  <14  Yes, limited  Yes  Proxy  Yes  13  West  Vendor A  25 500  <12  Yes, limited  Yesb  Caregiver  Yes  14  Northeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  Yes  15  West  Vendor B  100 000  <13  No  No  c  No  16  Midwest  Vendor A  2 100 000  <18  Yes  Yes  Caregiver  Yes  17  Northeast  Vendor A  239 800  <13  Yes, limited  Yes  Proxy  Yes  18  West  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  19  Southeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  20  Southwest  Vendor A  c  <14  Yes, limited  Yes  Proxy  Yes  aMaking a transition between vendors, or vendor in use varies by location. bOnly available for legal guardians and care partners of patients with disabilities. cNot specified or reported. All 20 health care delivery systems included shared access functionality for parents or legal guardians of children (n = 20), and most offered shared access for adolescent (n = 19) and adult (n = 18) patients, although 2 systems exclusively offered shared access for legal guardians of adult patients or for adult patients with disabilities. The age at which access to a child’s patient portal account terminates varied by system from: age 12 (n = 9), 13 (n = 7), 14 (n = 3), or 18 (n = 1); access to the patient portal account of an adolescent uniformly terminates at age 18. Most systems (n = 14) explicitly reported the availability of more limited patient portal features for adolescent patients, 1 system did not offer shared access functionality for adolescents, and 5 systems did not report whether features were more limited for this age group. Shared access functionality for adult patients was most commonly referred to as “proxy” (n = 12) or “caregiver” (n = 4) access; 1 system used the term “delegate” access and 1 system did not specify a term. Half of the systems (n = 10) mentioned the availability of shared access on the patient portal registration web page. Registration for shared access for adult patients was reported as being online (n = 3), by mail/fax (n = 9), in person (n = 9), or by a combination of modalities (Table 2). Of 18 systems offering shared access functionality for adult patients, 4 reported allowing multiple care partners, 2 reported limiting access to 1 care partner, 11 did not specify this information, and 1 reported contradictory information. The duration over which care partners are granted access to an adult patient’s portal account was variably reported. Most systems extended shared access to a patient portal account until termination by the patient with no prespecified date (n = 8) or with a prespecified date (n = 3). One health care delivery system reported requiring care partners to be reauthorized every 10 years, 1 system reported affording adult patients the ability to select 6, 12, 18, or 24 months of shared access, and 5 systems did not specify the duration of shared access. Table 2. Registration and functionality for shared access to the adult patient portal at 20 health care delivery systems   Registration Mode  # of Care Partners  Duration of Access  Granularity  Care Partner Viewing Patient Messaging  1  Online  1  a  Full access  Yes  2  Mail or Fax  ≥1  Until terminated by patient  Full access  Yes  3  In Personb  ≥1b  Until terminated by patient  Full or partial  Limited to one care partner  4  In Person  ≥1  Until terminated by patient or prespecified date  Full or partial  If granted full access  5  In Person  a  Until terminated by patient or prespecified date  Full access  a  6  –  –  –  –  –  7  Mail or Fax  1b  Until terminated by patient  Full access  Yes  8  Online, Mail, or Fax  a  Patient specifies 6, 12, 18, or 24 months  Full access  a  9  Mail or Fax  a  Until terminated by patient or prespecified date  Full access  Yes  10  Mail, Fax, In Person  1  Until terminated by patient  Full access  Yes  11  In Person  a  Until terminated by patient  Full access  a  12  Mail  a  10-year intervals  Full access  a  13  In Person  ≥1  a  Full access  Yes  14  Onlinec  a  a  Full access  Yes  15  –  –  –  –  –  16  Mail, Fax, or In Person  a  Until terminated by patient  Full access  Yes  17  Mail or Fax  a  Until terminated by patient  Full access  Yes  18  In Person  a  a  Full access  Yes  19  In Person  a  a  Full access  Yes  20  Mail or Fax  a  Until terminated by patient  Full access  a    Registration Mode  # of Care Partners  Duration of Access  Granularity  Care Partner Viewing Patient Messaging  1  Online  1  a  Full access  Yes  2  Mail or Fax  ≥1  Until terminated by patient  Full access  Yes  3  In Personb  ≥1b  Until terminated by patient  Full or partial  Limited to one care partner  4  In Person  ≥1  Until terminated by patient or prespecified date  Full or partial  If granted full access  5  In Person  a  Until terminated by patient or prespecified date  Full access  a  6  –  –  –  –  –  7  Mail or Fax  1b  Until terminated by patient  Full access  Yes  8  Online, Mail, or Fax  a  Patient specifies 6, 12, 18, or 24 months  Full access  a  9  Mail or Fax  a  Until terminated by patient or prespecified date  Full access  Yes  10  Mail, Fax, In Person  1  Until terminated by patient  Full access  Yes  11  In Person  a  Until terminated by patient  Full access  a  12  Mail  a  10-year intervals  Full access  a  13  In Person  ≥1  a  Full access  Yes  14  Onlinec  a  a  Full access  Yes  15  –  –  –  –  –  16  Mail, Fax, or In Person  a  Until terminated by patient  Full access  Yes  17  Mail or Fax  a  Until terminated by patient  Full access  Yes  18  In Person  a  a  Full access  Yes  19  In Person  a  a  Full access  Yes  20  Mail or Fax  a  Until terminated by patient  Full access  a  aNot specified or reported. bConflicting information reported. cMail, fax, in-person registration for patients who do not have a patient portal account and do not wish to make one. Two systems reported affording adult patients the ability to differentially authorize care partners with granular privileges for specific portal features (eg, to schedule appointments or refill medications but not view health information). More than half of the systems (n = 13) reported that care partners were able to view secure messaging between adult patients and their providers; 5 systems did not specify whether care partners had this ability. CONCLUSIONS We examined the availability, registration procedures, and features of shared access to patient portals at 20 large, geographically distributed health care delivery systems in the United States. All 20 health systems reported the availability of shared access functionality; 18 health systems reported shared access availability for adult patients. However, shared access registration procedures, features, and terminology varied widely, as did the comprehensiveness of publicly reported information on institutional websites. None of the systems reported the number of registered patient portal users with authorized care partners. Half of the systems we examined (n = 10 of 20) described the availability of shared access on the main patient portal registration page. Few systems afforded patients the ability to selectively grant care partners specific functionality for their patient portal accounts (eg, to schedule appointments or view health information without exchanging secure messaging with providers). Results of this environmental scan indicate that consumer-oriented information about the availability and features of shared access to patient portals has not been consistently or comprehensively reported on health systems’ institutional websites. The lack of attention to reporting this information stands in stark contrast to patients’ expressed preference for sharing their electronic health information with family members and close friends2,16–18 and the importance of providing information access to family caregivers.10,19–21 In light of the important role that family members and close friends assume in the care of vulnerable patients,16,22 respecting an individual’s preference to formally authorize a family member with shared access to his or her patient portal account merits greater attention and effort as a strategy to facilitate the delivery of person- and family-centered care23 and improve appropriate information access and communication between patients, families, and care providers.12–15 The terms “proxy” and “caregiver” were most commonly used to describe shared access functionality on health systems’ institutional websites. As these terms are typically used to refer to circumstances involving physical or cognitive impairment, they may not resonate with the broader population of patients who may desire to formally authorize a family member or friend to participate in their care.18 Patients’ motivations for sharing access to their portal accounts are highly variable,11 suggesting that there are drawbacks to the prevailing use of role-based terms for promoting awareness and uptake of shared access functionality. Adopting terminology that better resonates with patients and families could increase awareness and uptake of shared access to provider-sponsored patient portals. It is notable that just 2 of the 20 systems reported having the availability of granular role-based functionality, whereby adult patients can select differentiated, and more limited, privileges for care partners; the majority of health systems appear to afford care partners full privileges to the entire spectrum of patient portal functionality. Most health systems reported that care partners are able to view secure messaging between patients and providers. Because patients’ preferences for sharing their electronic health information vary widely,18,24 affording patients the ability to specify preferences for care partner privileges merits consideration, in order to provide patients with greater choice and control in their information-sharing practices and to more effectively differentiate the value of shared access functionality. Although this environmental scan provides preliminary insight regarding how health care delivery systems have structured registration and functionality so that patients can share access to their patient portal accounts, limitations merit comment. We examined a convenience sample of 20 health systems that primarily relied on 2 electronic health record vendors, and our findings therefore have limited generalizability. We examined publicly reported information and cannot confirm the accuracy of information reported on institutional websites with respect to actual registration processes or functionality. Likewise, we were unable to examine the actual implementation or internal communication processes that advertise shared access to patients, providers, and administrators. This study did not examine “out-of-the-box” shared access functionality of mainstream electronic health record vendors, which undoubtedly affects the implementation decisions of integrated health systems, given the expense, effort, and time that customization requires. Finally, we did not examine and are unable to comment on the clinical or policy implications relating to shared access implementation. Future studies should evaluate how organizational characteristics and registration processes affect the uptake and use of shared access functionality and its effects on care quality. In light of projected increases in the numbers of Americans living with age-related cognitive and sensory deficits and the continued diffusion of health information technology and use of secure messaging as a mainstream mode of communication,25 the importance of identifying strategies to clarify and execute individual preferences for engaging family care partners in electronic health system interactions will only grow in the coming years. The ability of health care delivery systems to distinguish whether providers are electronically interacting with patients, family members, or both will be necessary if learning health systems are to effectively leverage the patient portal in patient-reported data capture26,27 and quality reporting.28 Efforts to streamline registration processes, clarify terminology, and promote awareness and use of shared access may help to achieve this goal. ACKNOWLEDGMENTS This study was supported by the Atlantic Philanthropies Health and Aging Policy Program (JLW) and the Medical Student Training in Aging program, administered by the American Federation for Aging Research and funded by the National Institute on Aging, the MetLife Foundation, and the John A Hartford Foundation. The sponsors were not involved in the study concept or design, recruitment of subjects or acquisition of data, data analysis or interpretation, or preparation of this manuscript. The authors gratefully acknowledge the helpful input of Alan Stevens and David Dorr on a prior version of the manuscript. Conflict of interest The authors declare that they do not have a conflict of interest. References 1 Ricciardi L, Mostashari F, Murphy J, Daniel JG, Siminerio EP. A national action plan to support consumer engagement via e-health. Health Affairs.  2013; 32 2: 376– 84. Google Scholar CrossRef Search ADS   2 Delbanco T, Walker J, Bell SKet al.  , Inviting patients to read their doctors’ notes: a quasi-experimental study and a look ahead. Ann Int Med.  2012; 157 7: 461– 70. Google Scholar CrossRef Search ADS   3 Zickuhr K, Madden M. Pew Internet & American Life Project: Older Adults and Internet Use . Washington, DC: Pew Research Center; 2012. 4 Greysen SR, Chin Garcia C, Sudore RL, Cenzer IS, Covinsky KE. Functional impairment and internet use among older adults: implications for meaningful use of patient portals. JAMA Int Med.  2014; 174 7: 1188– 90. Google Scholar CrossRef Search ADS   5 Osborn CY, Mayberry LS, Wallston KA, Johnson KB, Elasy TA. Understanding patient portal use: implications for medication management. J Med Int Res.  2013; 15 7: e133. 6 Palen TE, Ross C, Powers JD, Xu S. Association of online patient access to clinicians and medical records with use of clinical services. J Am Med Assoc.  2012; 308 19: 2012– 19. Google Scholar CrossRef Search ADS   7 Taha J, Czaja SJ, Sharit J, Morrow DG. Factors affecting usage of a personal health record (PHR) to manage health. Psychol Aging.  2013; 28 4: 1124– 39. Google Scholar CrossRef Search ADS PubMed  8 Czaja SJ, Sharit J, Lee CCet al.  , Factors influencing use of an e-health website in a community sample of older adults. J Am Med Inform Assoc.  2013; 20 2: 277– 84. Google Scholar CrossRef Search ADS PubMed  9 Wolff JL, Darer JD, Larsen KL. Family caregivers and consumer health information technology. J General Int Med.  2016; 31 1: 117– 21. Google Scholar CrossRef Search ADS   10 Vick J, Amjad H, Smith KCet al.  , “Let him speak”: A descriptive qualitative study of the roles and behaviors of family companions in primary care visits among older adults with cognitive impairment. Int J Geriatric Psychiatr . 2017. doi: 10.1002/gps.4732. 11 Wolff JL, Berger A, Clarke Det al.  , Patients, care partners, and shared access to the patient portal: online practices at an integrated health system. J Am Med Inform Assoc.  2016; 23 6: 1150– 58. Google Scholar CrossRef Search ADS PubMed  12 Piette JD, Marinec N, Janda Ket al.  , Structured caregiver feedback enhances engagement and impact of mobile health support: a randomized trial in a lower-middle-income country. Telemed J E-health.  2016; 22 4: 261– 68. Google Scholar CrossRef Search ADS PubMed  13 Piette JD, Striplin D, Marinec Net al.  , A mobile health intervention supporting heart failure patients and their informal caregivers: a randomized comparative effectiveness trial. J Med Internet Res.  2015; 17 6: e142. Google Scholar CrossRef Search ADS PubMed  14 Aikens JE, Trivedi R, Heapy A, Pfeiffer PN, Piette JD. Potential impact of incorporating a patient-selected support person into mHealth for depression. J General Int Med.  2015; 30 6: 797– 803. Google Scholar CrossRef Search ADS   15 Wolff JL, Darer JD, Berger Aet al.  , Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records. J Am Med Inform Assoc.  2017; 24( e1): e166– 72. Google Scholar PubMed  16 Mayberry LS, Kripalani S, Rothman RL, Osborn CY. Bridging the digital divide in diabetes: family support and implications for health literacy. Diabetes Technol Ther.  2011; 13 10: 1005– 12. Google Scholar CrossRef Search ADS PubMed  17 Woods SS, Schwartz E, Tuepker Aet al.  , Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet Personal Health Record Pilot: qualitative study. J Med Int Res.  2013; 15 3: e65. 18 Zulman DM, Nazi KM, Turvey CL, Wagner TH, Woods SS, An LC. Patient interest in sharing personal health record information: a web-based survey. Ann Int Med.  2011; 155 12: 805– 10. Google Scholar CrossRef Search ADS   19 Bute JJ, Petronio S, Torke AM. Surrogate decision makers and proxy ownership: challenges of privacy management in health care decision making. Health Commun.  2015; 30 8: 799– 809. Google Scholar CrossRef Search ADS PubMed  20 Torke AM, Petronio S, Purnell CE, Sachs GA, Helft PR, Callahan CM. Communicating with clinicians: the experiences of surrogate decision-makers for hospitalized older adults. J Am Geriatrics Soc.  2012; 60 8: 1401– 07. Google Scholar CrossRef Search ADS   21 Zulman DM, Piette JD, Jenchura EC, Asch SM, Rosland AM. Facilitating out-of-home caregiving through health information technology: survey of informal caregivers’ current practices, interests, and perceived barriers. J Med Int Res.  2013; 15 7: e123. 22 NASEM. Families Caring for an Aging America . Washington, DC: National Academies of Sciences, Engineering, and Medicine; 2016. 23 NQF. Final Report: Addressing Performance Measure Gaps in Person-Centered Care and Outcomes . August 15, 2014. 24 Crotty BH, Walker J, Dierks Met al.  , Information sharing preferences of older patients and their families. JAMA Int Med.  2015; 175 9: 375– 82. Google Scholar CrossRef Search ADS   25 Garrido T, Meng D, Wang JJ, Palen TE, Kanter MH. Secure e-mailing between physicians and patients: transformational change in ambulatory care. J Ambulatory Care Manag.  2014; 37 3: 211– 18. Google Scholar CrossRef Search ADS   26 McGlynn EA, Lieu TA, Durham MLet al.  , Developing a data infrastructure for a learning health system: the PORTAL network. J Am Med Inform Assoc.  2014; 21 4: 596– 601. Google Scholar CrossRef Search ADS PubMed  27 Bajracharya AS, Crotty BH, Kowaloff HB, Safran C, Slack WV. Improving health care proxy documentation using a web-based interview through a patient portal. J Am Med Inform Assoc.  2016; 23 3: 580– 87. Google Scholar CrossRef Search ADS PubMed  28 CMS. Electronic Specifications for Clinical Quality Measures . 2015. https://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Electronic_Reporting_Spec.html. Accessed February 10, 2016. PubMed PubMed  © The Author 2017. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of the American Medical Informatics Association Oxford University Press

An environmental scan of shared access to patient portals

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Oxford University Press
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© The Author 2017. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com
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1067-5027
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1527-974X
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Abstract

Abstract We sought to understand the comprehensiveness of consumer-oriented information describing the availability of shared access to adult patient portals from publicly reported information on institutional websites of 20 large and geographically diverse health systems. All 20 health systems reported that they offer patients the ability to share access to their patient portal account with a family member or friend; however, the comprehensiveness of information regarding registration procedures, features, and terminology varied widely. Half of the systems (n = 10) reported having shared access available on their patient portal registration webpage. Few systems (n = 2) reported affording patients the ability to differentiate specific role-based privileges. No systems reported uptake of shared access among adult patients, which was variably described as “proxy,” “caregiver,” “parental,” or “delegate” access. Findings suggest that engaging families through health information technology will require greater efforts to promote awareness and differentiate privileges that respect patients’ choice and control in information-sharing preferences. health information technology, electronic health records, family caregivers INTRODUCTION The patient portal is a personal health record that is tethered to an electronic health record through which patients may view their health information and perform health management tasks electronically. Although the patient portal is a valuable strategy for engaging patients in their care,1,2 not all patients have access to or are capable of using a computer or mobile device to manage their health.3,4 Individuals who are older, with lower educational attainment, impaired cognitive function, and more limited technology experience are less likely to use a patient portal5,6 and are less able to perform health management tasks electronically.7,8 It is parents who generally assume responsibility for digital health system interactions in pediatric medicine. Some health systems allow adult patients to explicitly “share” access to their patient portal account with a family member or friend “care partner” through a registration process in which the care partner is provided with his or her own identity credentials (login and password). There are theoretical and practical reasons to believe that shared access could improve care, especially for patients who are more vulnerable, many of whom rely on and desire help from others.9,10 Indeed, emerging evidence finds that care partners who have been authorized to access patient portal accounts are comparatively better educated, more confident in their ability to manage aspects of patient health, and more frequent users of health information technology than adult patients.11 Interventional studies suggest that there is clinical benefit from proactively engaging care partners through health information technology.12–15 A foundational step to engaging patients and care partners through consumer health information technology is promoting awareness of the availability and process through which technologies can be accessed. However, no study to date has examined how health systems communicate information about the availability of shared access to the public, or how they have approached the implementation of shared access registration and functionality. Therefore, we conducted an environmental scan of publicly reported information on the institutional websites of 20 geographically diverse health care delivery systems located in the United States to determine the availability of information about and features of shared access functionality to the patient portal. METHODS We conducted an environmental scan to assess the availability, functionality, and registration processes for shared access to patient portal accounts at 20 academic or not-for-profit health care delivery systems. We included regional centers of excellence and sought to achieve a relatively balanced distribution of systems by geographic region. Drawing on our prior work to date,9,11 we developed a data abstraction tool to delineate pertinent features of patient portal functionality for each system. Information was extracted from consumer-oriented information reported on each system’s institutional website between July 2016 and February 2017. Abstraction of information was independently performed by 2 coauthors, and disagreements were discussed and resolved by the study team. For each health system, we abstracted information about the electronic health record vendor in use, the number of patients who were reported as having registered for the portal, the availability of shared access to the patient portal by patient age group (ie, children, adolescents, adults), the term used to describe shared access for adult patients (“caregiver,” “proxy,” “delegate”), and whether the availability of shared access was specifically mentioned on the registration page for the patient portal (yes/no). Information about shared access registration procedures for care partners of adult patients included: mode of registration (online, mail/fax, in person), number of care partners who may be registered for a patient’s portal account, and duration of shared access. Information regarding the functionality of shared access included degree of granularity (full vs partial access to features) and care partners’ ability to view secure messaging between adult patients and their providers. We additionally assessed the comprehensiveness of information and note elements for which information was not reported. The identity of each health system has been anonymized. RESULTS Health care delivery systems were geographically located in the Northeast (n = 4), Southeast (n = 3), Southwest (n = 1), Midwest (n = 3), Mid-Atlantic (n = 1), and West (n = 8) and primarily relied on 2 electronic health record vendors (Table 1). All 20 systems described operating a consumer-facing patient portal on their institutional website. More than half (n = 12) of the health care delivery systems reported the number of registered patient portal users; the user base varied widely from 13 000 to 5.2 million. No systems reported the proportion or number of patients who had authorized one or more care partners with access to their patient portal account. Table 1. Availability and features of shared access to the patient portal at 20 health care delivery systems Characteristics of System   Availability by Age Group   Available Information About Shared Access to Patients     Region  Vendor  User Base  Parent  Adolescent (<18)  Adult (18+)  Name of Access  Described on Registration Page  1  West  Vendor A  5 200 000  <12  Yes, limited  Yes  Caregiver  Yes  2  Northeast  Vendor A  240 000  <14  Yes  Yes  Caregiver  Yes  3  Southeast  In-housea  142 000  <13  Yes  Yes  Delegate  Yes  4  Mid-Atlantic  Vendor A  267 000  <13  Yes, limited  Yes  Proxy  No  5  Midwest  Vendor Ba  330 000  <13  Yes, limited  Yesb  c  No  6  West  Vendor A  c  <13  c  No  Parentalc  No  7  West  Vendor A  1 000 000  <12  Yes, limited  Yes  Proxy  Yes  8  Midwest  Vendor A  13 000  <13  Yes  Yes  Proxy  No  9  Northeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  10  Southeast  Vendor A  396 000  <12  Yes, limited  Yes  Proxy  No  11  West  Vendor B  c  <12  Yes, limited  Yes  Proxy  No  12  West  Vendor A  c  <14  Yes, limited  Yes  Proxy  Yes  13  West  Vendor A  25 500  <12  Yes, limited  Yesb  Caregiver  Yes  14  Northeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  Yes  15  West  Vendor B  100 000  <13  No  No  c  No  16  Midwest  Vendor A  2 100 000  <18  Yes  Yes  Caregiver  Yes  17  Northeast  Vendor A  239 800  <13  Yes, limited  Yes  Proxy  Yes  18  West  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  19  Southeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  20  Southwest  Vendor A  c  <14  Yes, limited  Yes  Proxy  Yes  Characteristics of System   Availability by Age Group   Available Information About Shared Access to Patients     Region  Vendor  User Base  Parent  Adolescent (<18)  Adult (18+)  Name of Access  Described on Registration Page  1  West  Vendor A  5 200 000  <12  Yes, limited  Yes  Caregiver  Yes  2  Northeast  Vendor A  240 000  <14  Yes  Yes  Caregiver  Yes  3  Southeast  In-housea  142 000  <13  Yes  Yes  Delegate  Yes  4  Mid-Atlantic  Vendor A  267 000  <13  Yes, limited  Yes  Proxy  No  5  Midwest  Vendor Ba  330 000  <13  Yes, limited  Yesb  c  No  6  West  Vendor A  c  <13  c  No  Parentalc  No  7  West  Vendor A  1 000 000  <12  Yes, limited  Yes  Proxy  Yes  8  Midwest  Vendor A  13 000  <13  Yes  Yes  Proxy  No  9  Northeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  10  Southeast  Vendor A  396 000  <12  Yes, limited  Yes  Proxy  No  11  West  Vendor B  c  <12  Yes, limited  Yes  Proxy  No  12  West  Vendor A  c  <14  Yes, limited  Yes  Proxy  Yes  13  West  Vendor A  25 500  <12  Yes, limited  Yesb  Caregiver  Yes  14  Northeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  Yes  15  West  Vendor B  100 000  <13  No  No  c  No  16  Midwest  Vendor A  2 100 000  <18  Yes  Yes  Caregiver  Yes  17  Northeast  Vendor A  239 800  <13  Yes, limited  Yes  Proxy  Yes  18  West  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  19  Southeast  Vendor A  c  <12  Yes, limited  Yes  Proxy  No  20  Southwest  Vendor A  c  <14  Yes, limited  Yes  Proxy  Yes  aMaking a transition between vendors, or vendor in use varies by location. bOnly available for legal guardians and care partners of patients with disabilities. cNot specified or reported. All 20 health care delivery systems included shared access functionality for parents or legal guardians of children (n = 20), and most offered shared access for adolescent (n = 19) and adult (n = 18) patients, although 2 systems exclusively offered shared access for legal guardians of adult patients or for adult patients with disabilities. The age at which access to a child’s patient portal account terminates varied by system from: age 12 (n = 9), 13 (n = 7), 14 (n = 3), or 18 (n = 1); access to the patient portal account of an adolescent uniformly terminates at age 18. Most systems (n = 14) explicitly reported the availability of more limited patient portal features for adolescent patients, 1 system did not offer shared access functionality for adolescents, and 5 systems did not report whether features were more limited for this age group. Shared access functionality for adult patients was most commonly referred to as “proxy” (n = 12) or “caregiver” (n = 4) access; 1 system used the term “delegate” access and 1 system did not specify a term. Half of the systems (n = 10) mentioned the availability of shared access on the patient portal registration web page. Registration for shared access for adult patients was reported as being online (n = 3), by mail/fax (n = 9), in person (n = 9), or by a combination of modalities (Table 2). Of 18 systems offering shared access functionality for adult patients, 4 reported allowing multiple care partners, 2 reported limiting access to 1 care partner, 11 did not specify this information, and 1 reported contradictory information. The duration over which care partners are granted access to an adult patient’s portal account was variably reported. Most systems extended shared access to a patient portal account until termination by the patient with no prespecified date (n = 8) or with a prespecified date (n = 3). One health care delivery system reported requiring care partners to be reauthorized every 10 years, 1 system reported affording adult patients the ability to select 6, 12, 18, or 24 months of shared access, and 5 systems did not specify the duration of shared access. Table 2. Registration and functionality for shared access to the adult patient portal at 20 health care delivery systems   Registration Mode  # of Care Partners  Duration of Access  Granularity  Care Partner Viewing Patient Messaging  1  Online  1  a  Full access  Yes  2  Mail or Fax  ≥1  Until terminated by patient  Full access  Yes  3  In Personb  ≥1b  Until terminated by patient  Full or partial  Limited to one care partner  4  In Person  ≥1  Until terminated by patient or prespecified date  Full or partial  If granted full access  5  In Person  a  Until terminated by patient or prespecified date  Full access  a  6  –  –  –  –  –  7  Mail or Fax  1b  Until terminated by patient  Full access  Yes  8  Online, Mail, or Fax  a  Patient specifies 6, 12, 18, or 24 months  Full access  a  9  Mail or Fax  a  Until terminated by patient or prespecified date  Full access  Yes  10  Mail, Fax, In Person  1  Until terminated by patient  Full access  Yes  11  In Person  a  Until terminated by patient  Full access  a  12  Mail  a  10-year intervals  Full access  a  13  In Person  ≥1  a  Full access  Yes  14  Onlinec  a  a  Full access  Yes  15  –  –  –  –  –  16  Mail, Fax, or In Person  a  Until terminated by patient  Full access  Yes  17  Mail or Fax  a  Until terminated by patient  Full access  Yes  18  In Person  a  a  Full access  Yes  19  In Person  a  a  Full access  Yes  20  Mail or Fax  a  Until terminated by patient  Full access  a    Registration Mode  # of Care Partners  Duration of Access  Granularity  Care Partner Viewing Patient Messaging  1  Online  1  a  Full access  Yes  2  Mail or Fax  ≥1  Until terminated by patient  Full access  Yes  3  In Personb  ≥1b  Until terminated by patient  Full or partial  Limited to one care partner  4  In Person  ≥1  Until terminated by patient or prespecified date  Full or partial  If granted full access  5  In Person  a  Until terminated by patient or prespecified date  Full access  a  6  –  –  –  –  –  7  Mail or Fax  1b  Until terminated by patient  Full access  Yes  8  Online, Mail, or Fax  a  Patient specifies 6, 12, 18, or 24 months  Full access  a  9  Mail or Fax  a  Until terminated by patient or prespecified date  Full access  Yes  10  Mail, Fax, In Person  1  Until terminated by patient  Full access  Yes  11  In Person  a  Until terminated by patient  Full access  a  12  Mail  a  10-year intervals  Full access  a  13  In Person  ≥1  a  Full access  Yes  14  Onlinec  a  a  Full access  Yes  15  –  –  –  –  –  16  Mail, Fax, or In Person  a  Until terminated by patient  Full access  Yes  17  Mail or Fax  a  Until terminated by patient  Full access  Yes  18  In Person  a  a  Full access  Yes  19  In Person  a  a  Full access  Yes  20  Mail or Fax  a  Until terminated by patient  Full access  a  aNot specified or reported. bConflicting information reported. cMail, fax, in-person registration for patients who do not have a patient portal account and do not wish to make one. Two systems reported affording adult patients the ability to differentially authorize care partners with granular privileges for specific portal features (eg, to schedule appointments or refill medications but not view health information). More than half of the systems (n = 13) reported that care partners were able to view secure messaging between adult patients and their providers; 5 systems did not specify whether care partners had this ability. CONCLUSIONS We examined the availability, registration procedures, and features of shared access to patient portals at 20 large, geographically distributed health care delivery systems in the United States. All 20 health systems reported the availability of shared access functionality; 18 health systems reported shared access availability for adult patients. However, shared access registration procedures, features, and terminology varied widely, as did the comprehensiveness of publicly reported information on institutional websites. None of the systems reported the number of registered patient portal users with authorized care partners. Half of the systems we examined (n = 10 of 20) described the availability of shared access on the main patient portal registration page. Few systems afforded patients the ability to selectively grant care partners specific functionality for their patient portal accounts (eg, to schedule appointments or view health information without exchanging secure messaging with providers). Results of this environmental scan indicate that consumer-oriented information about the availability and features of shared access to patient portals has not been consistently or comprehensively reported on health systems’ institutional websites. The lack of attention to reporting this information stands in stark contrast to patients’ expressed preference for sharing their electronic health information with family members and close friends2,16–18 and the importance of providing information access to family caregivers.10,19–21 In light of the important role that family members and close friends assume in the care of vulnerable patients,16,22 respecting an individual’s preference to formally authorize a family member with shared access to his or her patient portal account merits greater attention and effort as a strategy to facilitate the delivery of person- and family-centered care23 and improve appropriate information access and communication between patients, families, and care providers.12–15 The terms “proxy” and “caregiver” were most commonly used to describe shared access functionality on health systems’ institutional websites. As these terms are typically used to refer to circumstances involving physical or cognitive impairment, they may not resonate with the broader population of patients who may desire to formally authorize a family member or friend to participate in their care.18 Patients’ motivations for sharing access to their portal accounts are highly variable,11 suggesting that there are drawbacks to the prevailing use of role-based terms for promoting awareness and uptake of shared access functionality. Adopting terminology that better resonates with patients and families could increase awareness and uptake of shared access to provider-sponsored patient portals. It is notable that just 2 of the 20 systems reported having the availability of granular role-based functionality, whereby adult patients can select differentiated, and more limited, privileges for care partners; the majority of health systems appear to afford care partners full privileges to the entire spectrum of patient portal functionality. Most health systems reported that care partners are able to view secure messaging between patients and providers. Because patients’ preferences for sharing their electronic health information vary widely,18,24 affording patients the ability to specify preferences for care partner privileges merits consideration, in order to provide patients with greater choice and control in their information-sharing practices and to more effectively differentiate the value of shared access functionality. Although this environmental scan provides preliminary insight regarding how health care delivery systems have structured registration and functionality so that patients can share access to their patient portal accounts, limitations merit comment. We examined a convenience sample of 20 health systems that primarily relied on 2 electronic health record vendors, and our findings therefore have limited generalizability. We examined publicly reported information and cannot confirm the accuracy of information reported on institutional websites with respect to actual registration processes or functionality. Likewise, we were unable to examine the actual implementation or internal communication processes that advertise shared access to patients, providers, and administrators. This study did not examine “out-of-the-box” shared access functionality of mainstream electronic health record vendors, which undoubtedly affects the implementation decisions of integrated health systems, given the expense, effort, and time that customization requires. Finally, we did not examine and are unable to comment on the clinical or policy implications relating to shared access implementation. Future studies should evaluate how organizational characteristics and registration processes affect the uptake and use of shared access functionality and its effects on care quality. In light of projected increases in the numbers of Americans living with age-related cognitive and sensory deficits and the continued diffusion of health information technology and use of secure messaging as a mainstream mode of communication,25 the importance of identifying strategies to clarify and execute individual preferences for engaging family care partners in electronic health system interactions will only grow in the coming years. The ability of health care delivery systems to distinguish whether providers are electronically interacting with patients, family members, or both will be necessary if learning health systems are to effectively leverage the patient portal in patient-reported data capture26,27 and quality reporting.28 Efforts to streamline registration processes, clarify terminology, and promote awareness and use of shared access may help to achieve this goal. ACKNOWLEDGMENTS This study was supported by the Atlantic Philanthropies Health and Aging Policy Program (JLW) and the Medical Student Training in Aging program, administered by the American Federation for Aging Research and funded by the National Institute on Aging, the MetLife Foundation, and the John A Hartford Foundation. The sponsors were not involved in the study concept or design, recruitment of subjects or acquisition of data, data analysis or interpretation, or preparation of this manuscript. The authors gratefully acknowledge the helpful input of Alan Stevens and David Dorr on a prior version of the manuscript. Conflict of interest The authors declare that they do not have a conflict of interest. References 1 Ricciardi L, Mostashari F, Murphy J, Daniel JG, Siminerio EP. A national action plan to support consumer engagement via e-health. Health Affairs.  2013; 32 2: 376– 84. 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Journal

Journal of the American Medical Informatics Association – Oxford University Press

Published: Apr 1, 2018

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