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President's column: the community imperative—Share to Care and Cure

President's column: the community imperative—Share to Care and Cure Messages from AMIA President’s column: the community imperative—Share to Care and Cure much more common problems such as diabetes, obesity, The magnitude of change in the innovation and use of elec- rheumatoid arthritis, and a host of other conditions. And, more tronic health records (EHRs) and personal health records importantly, we are likely to find the answers to questions such (PHRs) has been dramatic in recent years. The 2009 Health as what happens if too much copper is ingested, by comparing Information Technology for Economic and Clinical Health large data sets of patients who willingly donate their records. (HITECH) Act stimulated the use of EHRs among providers As informaticians, we know that the best method for sup- and, coupled with the ubiquitous nature of the internet, created porting research on rare as well as common healthcare pro- a comparable increase in the use of PHRs by consumers. As blems is the use of information contained in EHRs and PHRs sophisticated, interoperable EHRs are used, individual patients held by doctors, hospitals, pharmacies, patients, and other are much more likely to receive the care ordered by their parts of the healthcare system. This is particularly true in the doctor, be monitored more carefully, and have their medical emergence of personalized or precision medicine where diag- record available regardless of where they are seeking care. noses and treatments can be tailored specifically to an indivi- Those of us in the field of informatics know that these dual’s genetics and health history. advances are slowly but surely moving us toward a learning However, despite the best of intentions, an enormous amount health system. We also know that—as a result of digitizing of potentially valuable data is held captive in EHRs—data that healthcare information and analyzing the data—we are disco- could help us determine whether a new drug is better than a less vering patterns of care that we did not even know existed! costly generic for treating a common problem, for example. Through the amalgamation of EHR and PHR information Today, the health data of our patients is locked up behind a wall along with other healthcare data (eg, from our local pharmacy) of complex ‘consent’ requirements constructed for a different and the use of data analytics, we are on the cusp of a new gen- era, an era of paper records, an era when the case study might eration in how we think about healthcare. have been the most effective way of teaching, an era in which To discover new cures, improve care delivery to assure safe, the ‘learning’ health system was not even imagined. timely, and efficient care, and achieve an economically sustain- Federal and state policies relating to the use of individual able healthcare system, we must enable and encourage the use health data need simplification. Instead, the system of informed of clinical care data for research. consent designed for interventional research is applied to situa- But, there’s a problem. From my perspective, well-intentioned tions where researchers simply want to compare the treatments federal and state regulations concerning access to unanonymized of many different patients using clinical data from their EHRs identifiable, person-specific health data (what the Health and PHRs. From my perspective, it simply does not make sense Insurance Portability and Accountability Act (HIPAA) calls pro- to ask 5000 individuals to individually ‘consent’ to the use of tected health information or PHI) by researchers are proving to their information contained in their EHRs—especially if almost be somewhat inflexible. The result is that efforts by healthcare all of them are willing to share the data in the first place. We researchers for finding new cures and treatments are hampered. could ask consumers in advance whether they want to lock As an example, I have developed peripheral neuropathy over the their data or share it—with researchers. last several years due to a very rare problem—copper deficiency. Ironically, while most Americans strongly agree and support When I spoke with my physician about how to treat the the notion that research is critical to improving the care of problem, we decided that I needed to take massive doses of themselves and others, under current federal policy, there is copper which I diligently do three times a day. All is fine and simply insufficient opportunity for Americans to share their good since the neuropathy seems to have slowed in its progres- data with researchers even if we simultaneously protect the sion. However, when I asked the question: ‘What are the com- information. This must change! plications of taking too much copper?’, the response was: ‘We We need to change federal policy so that patients can Share don’t think there are any problems.’ I responded: ‘Does that to Care and Cure (S2C&C). The proposed approach will allow mean, we know?’ The response came back: ‘No, it means we for secure access to personal EHR data by legitimate biomedical don’t really know.’ So the outstanding question is: ‘What are the and public health researchers, reduce the acquisition costs of unintended consequences of taking too much copper?’ To data, and improve authentication of record data. Don Detmer, answer the question, I’m very keen on having my entire health MD, MA, former President/CEO of AMIA and an informatics database available for researchers who are interested in the leader and I along with a team of respected experts are crafting problem. In fact, most polls show that the vast majority of ideas on how Share to Care and Cure could be initiated for Americans are willing to share their data with researchers. While healthcare. We will be sharing these ideas over the next several copper deficiency is relatively rare, the same issue applies to months and look forward to the debate we want to precipitate on this most important issue for fostering effective research in the new world of electronic healthcare. The purpose of the Messages from AMIA section is to provide Kevin M Fickenscher a forum for AMIA to inform and involve its current and Correspondence to Dr Kevin M Fickenscher, AMIA, 4720 Montgomery Lane, potential members about the goals and the directions of the Suite 500, Bethesda, Maryland, USA; drkevin@amia.org association. These messages, which reflect the directions and Competing interests None. opinions of AMIA leaders only, are intended to inspire members and readers to connect with the association on Provenance and peer review Not commissioned; not internally peer reviewed. strategic objectives and activities. See also http://www.amia. To cite Fickenscher KM. J Am Med Inform Assoc 2013;20:1178. org/presidents-page. J Am Med Inform Assoc 2013;20:1178. doi:10.1136/amiajnl-2013-002299 1178 J Am Med Inform Assoc November 2013 Vol 20 No 6 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of the American Medical Informatics Association Oxford University Press

President's column: the community imperative—Share to Care and Cure

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Oxford University Press
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Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions
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1067-5027
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10.1136/amiajnl-2013-002299
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Abstract

Messages from AMIA President’s column: the community imperative—Share to Care and Cure much more common problems such as diabetes, obesity, The magnitude of change in the innovation and use of elec- rheumatoid arthritis, and a host of other conditions. And, more tronic health records (EHRs) and personal health records importantly, we are likely to find the answers to questions such (PHRs) has been dramatic in recent years. The 2009 Health as what happens if too much copper is ingested, by comparing Information Technology for Economic and Clinical Health large data sets of patients who willingly donate their records. (HITECH) Act stimulated the use of EHRs among providers As informaticians, we know that the best method for sup- and, coupled with the ubiquitous nature of the internet, created porting research on rare as well as common healthcare pro- a comparable increase in the use of PHRs by consumers. As blems is the use of information contained in EHRs and PHRs sophisticated, interoperable EHRs are used, individual patients held by doctors, hospitals, pharmacies, patients, and other are much more likely to receive the care ordered by their parts of the healthcare system. This is particularly true in the doctor, be monitored more carefully, and have their medical emergence of personalized or precision medicine where diag- record available regardless of where they are seeking care. noses and treatments can be tailored specifically to an indivi- Those of us in the field of informatics know that these dual’s genetics and health history. advances are slowly but surely moving us toward a learning However, despite the best of intentions, an enormous amount health system. We also know that—as a result of digitizing of potentially valuable data is held captive in EHRs—data that healthcare information and analyzing the data—we are disco- could help us determine whether a new drug is better than a less vering patterns of care that we did not even know existed! costly generic for treating a common problem, for example. Through the amalgamation of EHR and PHR information Today, the health data of our patients is locked up behind a wall along with other healthcare data (eg, from our local pharmacy) of complex ‘consent’ requirements constructed for a different and the use of data analytics, we are on the cusp of a new gen- era, an era of paper records, an era when the case study might eration in how we think about healthcare. have been the most effective way of teaching, an era in which To discover new cures, improve care delivery to assure safe, the ‘learning’ health system was not even imagined. timely, and efficient care, and achieve an economically sustain- Federal and state policies relating to the use of individual able healthcare system, we must enable and encourage the use health data need simplification. Instead, the system of informed of clinical care data for research. consent designed for interventional research is applied to situa- But, there’s a problem. From my perspective, well-intentioned tions where researchers simply want to compare the treatments federal and state regulations concerning access to unanonymized of many different patients using clinical data from their EHRs identifiable, person-specific health data (what the Health and PHRs. From my perspective, it simply does not make sense Insurance Portability and Accountability Act (HIPAA) calls pro- to ask 5000 individuals to individually ‘consent’ to the use of tected health information or PHI) by researchers are proving to their information contained in their EHRs—especially if almost be somewhat inflexible. The result is that efforts by healthcare all of them are willing to share the data in the first place. We researchers for finding new cures and treatments are hampered. could ask consumers in advance whether they want to lock As an example, I have developed peripheral neuropathy over the their data or share it—with researchers. last several years due to a very rare problem—copper deficiency. Ironically, while most Americans strongly agree and support When I spoke with my physician about how to treat the the notion that research is critical to improving the care of problem, we decided that I needed to take massive doses of themselves and others, under current federal policy, there is copper which I diligently do three times a day. All is fine and simply insufficient opportunity for Americans to share their good since the neuropathy seems to have slowed in its progres- data with researchers even if we simultaneously protect the sion. However, when I asked the question: ‘What are the com- information. This must change! plications of taking too much copper?’, the response was: ‘We We need to change federal policy so that patients can Share don’t think there are any problems.’ I responded: ‘Does that to Care and Cure (S2C&C). The proposed approach will allow mean, we know?’ The response came back: ‘No, it means we for secure access to personal EHR data by legitimate biomedical don’t really know.’ So the outstanding question is: ‘What are the and public health researchers, reduce the acquisition costs of unintended consequences of taking too much copper?’ To data, and improve authentication of record data. Don Detmer, answer the question, I’m very keen on having my entire health MD, MA, former President/CEO of AMIA and an informatics database available for researchers who are interested in the leader and I along with a team of respected experts are crafting problem. In fact, most polls show that the vast majority of ideas on how Share to Care and Cure could be initiated for Americans are willing to share their data with researchers. While healthcare. We will be sharing these ideas over the next several copper deficiency is relatively rare, the same issue applies to months and look forward to the debate we want to precipitate on this most important issue for fostering effective research in the new world of electronic healthcare. The purpose of the Messages from AMIA section is to provide Kevin M Fickenscher a forum for AMIA to inform and involve its current and Correspondence to Dr Kevin M Fickenscher, AMIA, 4720 Montgomery Lane, potential members about the goals and the directions of the Suite 500, Bethesda, Maryland, USA; drkevin@amia.org association. These messages, which reflect the directions and Competing interests None. opinions of AMIA leaders only, are intended to inspire members and readers to connect with the association on Provenance and peer review Not commissioned; not internally peer reviewed. strategic objectives and activities. See also http://www.amia. To cite Fickenscher KM. J Am Med Inform Assoc 2013;20:1178. org/presidents-page. J Am Med Inform Assoc 2013;20:1178. doi:10.1136/amiajnl-2013-002299 1178 J Am Med Inform Assoc November 2013 Vol 20 No 6

Journal

Journal of the American Medical Informatics Association – Oxford University Press

Published: Nov 1, 2013

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