Patient informaticians: Turning patient voice into patient action

Patient informaticians: Turning patient voice into patient action JAMIA Open, 0(0), 2018, 1–6 doi: 10.1093/jamiaopen/ooy014 Perspective Perspective Patient informaticians: Turning patient voice into patient action Carolyn Petersen Global Business Solutions, Mayo Clinic, Rochester, Minnesota, USA Corresponding Author: Carolyn Petersen, MS, MBI, Global Business Solutions, Mayo Clinic, 200 First St. SW, Rochester, MN 55905 USA (petersen.carolyn@mayo.edu) Received 5 December 2017; Revised 3 April 2018; Accepted 25 April 2018 ABSTRACT Historically, patients have held a passive role within healthcare, seeking consultation from and following the directions of providers and their care teams. However, changes in culture, education, and technology are mak- ing it possible for patients to proactively develop and implement technologies and approaches for health man- agement and quality of life enhancement—to act as patient informaticians. This perspective reviews the societal shifts facilitating the evolution of patient informaticians as discrete actors within healthcare, describes the work of patient informaticians and how this work differs from that of other patient roles (eg, patient advocates), con- siders examples of patient informaticians in action, and defines patient informaticians’ position relative to the healthcare system. Key words: patients, research personnel, consumer health informatics, patient advocacy, citizen science INTRODUCTION initiatives. Heightened awareness of informatics development, test- Informatics has been defined as the science of information, where in- ing, and continuous improvement processes through dissemination formation is defined as data with meaning. Correspondingly, infor- in open access journals has made it possible for hyperengaged maticians study data plus meaning and its usage and effects. Within patients to design and implement tools to meet their health goals. biomedical informatics, principle actors have included healthcare Multiple factors have driven, and now support, the emergence of providers (eg, physicians, nurses, speech therapists), computer scien- patient informaticians. Rising medical costs present an imperative tists and technologists, user interface designers, organizational man- for patients, who may pay higher premiums and deductibles, as well agement professionals, and others. Patients historically have as a greater share of covered services, particularly when forced to benefited from an informatics approach, but have rarely taken an seek care outside limited provider networks. Continuous changes in active role in informatics activities, though consumer health infor- health plan design and availability make it more difficult for some matics as a distinct field has been in development for at least patients to purchase insurance coverage on insurance exchanges or 20 years. Changes in the social, technology, and healthcare envi- through brokers, while those covered under government programs ronments, however, have created an opportunity for patients to ac- may be disqualified due to minimal changes in income or personal tively participate in creating and using data with meaning. Patient circumstances. Uncertainty about future availability of insurance, informaticians have begun taking their place in the field. access to needed members of the care team, and affordability Expansion of the patient role over the past decade has facilitated prompt some patients to seek less tenuous routes to health improve- the emergence of patient informaticians as a branch of medical in- ment than through the predominant healthcare system. formatics. The adoption of shared decision making as a clinical Beyond financial and insurance-related concerns, a greater socie- strategy and the emergence of the participatory medicine movement tal emphasis on taking responsibility for one’s health and being an set the stage for patient-designed, patient-implemented informatics engaged patient is driving patients to reconsider their relationship V The Author(s) 2018. Published by Oxford University Press on behalf of the American Medical Informatics Association. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com 1 Downloaded from https://academic.oup.com/jamiaopen/advance-article-abstract/doi/10.1093/jamiaopen/ooy014/5001912 by Ed 'DeepDyve' Gillespie user on 12 July 2018 2 JAMIA Open, 2018, Vol. 0, No. 0 with the healthcare system. Patients have long heard that they need PATIENT INFORMATICIANS DEFINED to change their diet, become more active, take their medication as Work that patients do to improve and/or maintain their health has directed, and proactively embrace other healthful practices, but ad- been recognized as a form of background work—work in which work- herence rates remain suboptimal. The marriage of consumer and ers are visible but their effort exists within a “background of expect- pervasive health informatics and the increase in high school students 28 29 ation.” These endeavors, sometimes dubbed “patient work,” take taking mathematics and science courses since 1990 makes it possi- many forms, such as collecting medical records and test results from ble for patients to create solutions to the challenges that previously multiple providers, following up on referral documents, and teaching prevented them from achieving desired health outcomes. residents care practices. Consumer health informatics researchers have Change within the healthcare system, including a growing will- acknowledged the need for and value of a patient work approach. In ingness by providers to recognize patients as researchers and partner their self-directed efforts to restore, maintain, and/or improve their with them to achieve mutual goals, has resulted in greater accep- health through interaction with the healthcare system, patient infor- tance of patient-initiated and patient-developed endeavors. Support maticians extend the function of patient work. for patient access to and control of health data by and about patients Though the work of patient informaticians differs from that of 5,6 is growing within the healthcare system, and healthcare research- engaged patients, it builds upon fundamental patient practices and ers increasingly recognize the value of engaging patients as co- skill sets. Patient informaticians identify unmet health needs, parse 7–9 researchers and identify meaningful, efficacious ways to do so. problems into components that can be addressed through data col- Patient researchers not only can be trained as researchers, but also 10–12 lection and analysis, devise strategies to overcome barriers, collect can function effectively as members of the research team. and analyze data, interpret results, and implement life and/or care Patients ability’ to function as researchers is unsurprising, given that changes to address their identified needs. They define workflows patients have already demonstrated the ability to troubleshoot and 13,14 that address health issues of concern to patients that result in im- solve their own care-related problems. An international panel of proved quality of life and greater satisfaction with the healthcare patient advocates influences health information technology policy system. These workflows may be temporary or permanent, and may and development through work with the Health Technology Assess- arise reactively in response to unmet needs or through proactive ment International’s Patient and Citizen Involvement Interest efforts to achieve patient-defined goals. Group. Patient informaticians’ work differs from other patient work in Too, the growing prevalence of devices and sensors that allow that patient informaticians act not only at directives of the healthcare people to track physiological functions, activity, sleep, and other system but also on imperatives defined by their and other patients’ health-related metrics facilitate a more nuanced understanding of lived experience. Although much of patient informaticians’ work personal health and performance. Patients use personal data to find occurs in an established environment (eg, an office), much of what patterns in their symptoms, gain confidence, and improve communi- they do is unanchored work, taking place in other locations deter- cation about their health with members of their care team. Al- mined by the nature of the tasks. Patient informaticians may analyze though the accuracy of data captured by wearable devices has proven variable, using data from wearables in conjunction with patient work, potentially extending the knowledge base used by tradi- medical measurements has proven successful in identifying Lyme tionally trained researchers and care teams, or may define new forms disease and inflammatory responses. Patients have expressed con- of patient work during the course of personal initiatives. fidence in their ability to use their data to test potential solutions to The activity of patients in today’s healthcare system builds upon personal health problems using mobile technology, and a self- the activities of patients who were engaged before them, and the experimentation framework lays out a path for teaching patients patients of today both benefit and incur harm from previous events. 18 32 how to do so. Reflexivity, the observation and consideration of one’s actions, is Through 2016, US$5.4 billion was invested in digital health one lens through which patient engagement with the healthcare sys- 19 33 start-ups worldwide. Under the Software Pre-Certification Pilot tem has been studied. From this perspective, patients position Program, the US Food & Drug Administration (FDA) will evaluate themselves when writing about their health and health care experi- both the software developer and the product as FDA develops tool ences, and their goals may vary, perhaps substantially, from the evaluation criteria, which may support research and development goals of those operating the Web sites to which they contribute. Pa- by patient informaticians. FDA now supports manufacturers’ shar- tient informations do reflect upon their activity and assume specific ing of patient-specific information—“information unique to an indi- positions relative to the healthcare system and other patients. How- vidual patient or unique to that patient’s treatment or diagnosis that ever, they react not to opportunities offered by others within some has been recorded, stored, processed, retrieved, and/or derived from overt or covert framework created by others, but rather, respond to a legally marketed medical device”—with patients at their request. needs lived by themselves or others they care about without regard Though manufacturers aren’t required to share patient data with for or reference to others’ agendas. Furthermore, patient informati- patients, manufacturers can no longer argue that regulatory con- cians do not compare their experiences with those of others, as do cerns prevent them from sharing data, which has been a barrier for patients sharing personal experiences via the Web and social media, patients seeking personal data for digital tool research and develop- but instead define and initiate their own experiences within the con- ment. Global type 1 diabetes research funder JDRF has since an- text of their own goals. nounced an initiative for development of open protocols for Patient informatics may appear to have much in common with 22–25 artificial pancreas technology, an approach co-developed by the participatory medicine, which has been defined as a movement in parent of a patient that patients have used to more easily access per- which patients and health professionals actively collaborate and en- 26 34 sonal data and/or control automated insulin delivery. And most courage one another as full partners in care. Patients participate in importantly, patients themselves want access to the data generated managing (or choosing not to manage) their health, though not all by devices they use to better engage with their care team and manage patients are “all in” to the same degree. In practice, many others their health. (eg, payors, health policy makers) work with patients and health Downloaded from https://academic.oup.com/jamiaopen/advance-article-abstract/doi/10.1093/jamiaopen/ooy014/5001912 by Ed 'DeepDyve' Gillespie user on 12 July 2018 JAMIA Open, 2018, Vol. 0, No. 0 3 35 43 professionals as co-managers of health. Although patient informa- The Nightscout Project was launched by a parent who wanted ticians may work with their care team to implement self-developed to access data flowing through the continuous glucose monitoring 44,45 health management practices and strategies, players such as health (CGM) system used by his 4-year-old child. The ability to con- policy makers are unlikely to actively participate in patient infor- tinuously monitor a child’s blood glucose level without disturbing matics. the child’s sleep provides improved quality of life, better glucose Patients engage with the healthcare system in many ways, and level control, and the opportunity to live a more typical life, for ex- there may be some overlap in the activities of other groups and those ample by attending sleepovers at friends’ homes. The ability to of patient informaticians. However, there are also important differen- download blood glucose data to personal devices such as smart- ces that support differentiation of patient informaticians from others: phones has been recognized as a potential factor in better glycemic control. In the Nightscout case, the parent hacked into the CGM Patient informaticians differ from clinical informaticians in that system and wrote code that provided access to the CGM data via patient informaticians collect medical, health-related, environmen- mobile, wearable, and web-based interfaces. This approach allowed tal, and other data to address health and quality of life issues. the parent to monitor the child at school, during activities, and while Clinical informaticians work across the healthcare delivery system asleep without unduly burdening either parent or child. Others who “to improve outcomes, lower costs, increase safety and promote have type 1 diabetes were interested in using this technology, so the the use of high-quality services.” Patient informaticians act parent created the Nightscout Project Web site, publishing the code across a broad spectrum of landscapes (eg, home, community, in an open source format. As word spread about the work via social schools, worksites) to achieve outcome-focused goals. media, others around the world who have type 1 diabetes began us- Patient informaticians differ from citizen scientists in that patient ing the information to create devices for their use, sometimes hosting informaticians collect data focused on specific health and quality of “build parties.” life issues. Citizen scientists collect large quantities of data to ad- The development of a system to detect the filling of ostomy bags dress a broad range of health, science, technology, and other provides another example of patient-driven informatics. Even when issues, typically under the supervision of career scientists and po- placed and managed with care, ostomy bags can leak, causing em- tentially with the goal of effecting change at the global level. Such barrassment and inconvenience and, potentially, health issues. Using data gathering frequently occurs over a long period of time (eg, dec- a cell phone battery and a flex sensor from a video game, a patient ades) and involves members of the public who do not know each developed the 11Health sensor to alert him when his ostomy bag other and have no connection to each other beyond project data was full and required changing. The patient then navigated the 38,39 collection. In contrast, patient informaticians work within an United States and United Kingdom regulatory systems to commer- established community linked by a shared health condition and cialize the device so that it could be made available to others. may aim to develop an individualized solution to a personal health Though technology and software development skills were neces- concern rather than a scalable solution to a medical problem. sary to create the Nightscout system and 11Health ostomy bag sen- Patient informaticians differ from e-patients in that patient infor- sor, patient informaticians need not possess technology development maticians may collect and share data electronically, within or skills to undertake patient informatics work. For example, a patient outside the established medical system, to find answers to broad informatician who has Raynaud’s syndrome might wish to better health and quality of life concerns. E-patients work directly with understand the conditions that trigger episodes of cold and numb- members of their care team to address medical and/or health ness in her extremities so that she could regularly exercise outside. issues using digital tools. To do this, she could collect precise measurements using a home Patient informaticians differ from patient advocates in that pa- weather station that transmits temperature, humidity, wind velocity tient informaticians primarily use technology to address real-life and direction, and precipitation readings to her personal computer issues in real time. Patient advocates perform a broad range of during the times she wishes to exercise. She could record the cloth- tasks that directly or indirectly support patients or reduce bar- ing worn during each session, perceived extremity sensation and riers patients face, such as raising awareness, lobbying legislative comfort levels, rate of perceived exertion, walking/running time and bodies, raising and allocating funds, influencing research design, distance, and other variables of interest. She could then graph pressuring payors to reimburse costs of medical care, promoting weather variables known to trigger episodes against performance clinical trials and recruiting participants, disseminating research and sensation variables to determine the most effective clothing in findings, developing online support communities, and others. each set of conditions encountered during exercise, which would al- Patient informaticians differ from self-trackers in that patient low her to select appropriate clothing to prevent or mitigate the se- informaticians structure data collection, analysis, and future verity of Raynaud’s episodes. She also could work with others who work to answer specific questions. Self-trackers gather personal experience similar challenges (eg, those who have systemic lupus data within defined domains (eg, exercise, sleep) with the goal of erythematosus, peripheral neuropathy) to implement neighborhood- learning more about how their body works, rather than creating specific guidelines, perhaps meeting with others in a group spon- scopable solutions to specific health problems. sored by a local healthcare facility. In this way, personal efforts to solve personal health problems can evolve into initiatives that sup- port population health study and management, perhaps in conjunc- PATIENT INFORMATICIANS AT WORK tion with health care institutions. Patient informaticians use self-collected data to address real-world concerns. The union of personal health experience, critical thinking, MORE THAN ENGAGED PATIENTS and subject matter expertise inform medical device development and lifestyle management for improved health and quality of life. The Patient engagement has been the subject of increasing interest and following examples illustrate the problem-solving approaches pa- study during the past 2 decades. Although the term is loosely de- tient informaticians may take. fined, it has come to represent a broad spectrum of activities ranging Downloaded from https://academic.oup.com/jamiaopen/advance-article-abstract/doi/10.1093/jamiaopen/ooy014/5001912 by Ed 'DeepDyve' Gillespie user on 12 July 2018 4 JAMIA Open, 2018, Vol. 0, No. 0 from consultation to partnership and shared leadership. At all lev- funding arrangements such as venture capital and business incuba- els of involvement, patients may be active participants in or passive tors. Ultimately, patient informaticians gain funders’ support on the recipients of interventions. In some instances patient feedback, strength of their innovation, patient expertise, and determination to rather than patient action, foments change undertaken by the health succeed. system or individual institutions within the system. In effect, these Given this fundamental paradigm shift, one might wonder about entities may use patients’ involvement in support of their own goals, the position of patient informaticians relative to the broader health- rather than goals defined by patients. Though engagement is an un- care system. Patient informaticians act in response to the failure of derlying driver of patient informaticians, it is not their primary healthcare institutions to meaningfully grasp and address their focus. health-related needs. Although researchers seek to address patients’ The concept of patient-centeredness in health care is similarly medical and health concerns, a gap often exists between researcher amorphous. An integrative model of patient-centeredness based on and patient priorities. Bioethics frames patients as weak and in analysis of 417 journal articles identified 15 dimensions of patient- need of protection, which may limit harm to the most vulnerable centeredness. Of these, experts identified “patient as a unique per- patients but also prevents benefit to those who are less fragile or son,” “patient involvement in care,” “patient information,” more capable of advocating for themselves. FDA’s willingness to “clinician-patient communication,” and “patient empowerment” as meet with patients to discuss how patient-developed technologies the most important dimensions. Notably, none of these dimen- can be implemented at scope suggests that there may be a pathway sions acknowledges the patient as an active, self-determinant being; for patient informaticians to function in ways traditionally acted by rather, all frame patient-centeredness in reference to the healthcare device manufacturers, software developers, and others with specific, system, an institution, or a provider. Given this fundamental differ- defined technical backgrounds. ence in worldview, it is not surprising that patient-centered out- Relative to healthcare providers, who typically spend many years comes research (PCOR) too may be at odds with the approach taken in highly proscribed training before treating patients, patient infor- by patient informaticians. PCOR researchers employ a variety of re- maticians may have little formal training. Healthcare system stake- search techniques (eg, focus groups, patient advisory councils, sur- holders may argue that this lack of directed education disqualifies veys) that may have little, if anything, to do with patient-defined patients from practicing informatics. Some may even argue that, interaction with the health system or informatics. Though such lacking this formal background, patient informaticians cannot be work may inform and/or complement patient informaticians’ regarded as professionals and/or as professional colleagues. How- efforts, PCOR too fails to place the patient at the center of the ever, it is unlikely that providers will refuse to engage with patients action. who develop tools and methods that support more desirable out- Despite this key difference, some might argue that the Patient- comes, improved health, and/or a more productive patient-provider Centered Outcomes Research Institute (PCORI) and other entities relationship. Patients’ contribution to recognizing, framing, and engaged in similar efforts address many of the goals and priorities of partnering in their care—and even taking the lead—is no longer in patient informaticians, and that as a result the work undertaken by question. The growing acceptance of this reality is facilitating patient informaticians is already being done by PCORI. However, patients’ entr ee into areas of medicine currently the domain of those significant differences in purpose, activities, and outputs exist be- with formal background. Successful development and deployment tween PCORI and patient informaticians. The most critical differ- of patient-developed products, such as the 11Health ostomy bag ence is structural: PCORI seeks to support patient as partners in sensor, is compelling evidence for the value of patient informati- cians. The work undertaken by patient informaticians will contrib- research, but awards research funding to health professionals in aca- ute to the emerging learning healthcare system, and thereby ensure a demic and other health system organizations who define the nature role for patient informaticians in 21st century medicine. of the work to be undertaken and how patients will engage with the funding recipients. Although patients must be involved in PCORI- funded research, they don’t set the research agenda, decide what role(s) patients will play in the work, evaluate the results, identify CONCLUSION next steps, make key decisions, or in other ways act autonomously. Although patient informaticians have yet to achieve the recognition This incongruity extends beyond research methods; when health experienced by informaticians in other branches of informatics, pa- services researchers speak of data sharing, they reference data shar- tient informaticians now act as distinct players within healthcare. ing among health researchers, rather than data sharing between Their efforts establish patients as active, self-determinant beings researchers and patients despite patients’ desire to control the 54,55 attaining functionality not facilitated by current standard-of-care data. In contrast, patient informaticians set the research agenda, approaches. Whether patient informaticians work formally within select or develop methods, conduct the work, analyze the resulting the healthcare system or informally in patient communities, their data, and determine how to proceed based on what has been goal is the same: to improve health outcomes and quality of life by learned. using knowledge and technology in novel ways. In pioneering new As with other informaticians, funding is a key consideration for strategies and tools, patient informaticians convert failure via patient informaticians. Although they may lack dedicated laboratory healthcare system-defined paths to success via self-defined and self- and clinical facilities, through collaboration with clinicians and developed approaches. researchers their work may be supported by traditional funders such 22 44 as the National Institutes of Health, universities, or private foun- dations. Crowdfunding has proven successful as a strategy for cov- ering treatment expenses, and it is rapidly maturing as a source of CONTRIBUTORS medical research funding via sites such as Medstartr and Con- C.P. conceived the ideas and wrote the manuscript. 57,58 sano. Patient informaticians also may have greater freedom and flexibility than researchers in academia to access nontraditional Conflict of interest statement. None declared. Downloaded from https://academic.oup.com/jamiaopen/advance-article-abstract/doi/10.1093/jamiaopen/ooy014/5001912 by Ed 'DeepDyve' Gillespie user on 12 July 2018 JAMIA Open, 2018, Vol. 0, No. 0 5 A mulricentre randomized crossover trial. Lancet 2017; 389 (10067): REFERENCES 369–80. 1. Bernstam EV, Smith JW, Johnson TR. What is biomedical informatics? J 26. JDRF. JDRF Announces New Initiative to Pave Way for Open Protocol Biomed Inform 2010; 43 (1): 104–10. Automated Insulin Delivery Systems. New York, NY: JDRF; 2017.http:// 2. Kaplan B, Brennan PF. 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Vanderbilt J Entertain Technol Law 2017; 19 (2): 243–65. Downloaded from https://academic.oup.com/jamiaopen/advance-article-abstract/doi/10.1093/jamiaopen/ooy014/5001912 by Ed 'DeepDyve' Gillespie user on 12 July 2018 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMIA Open Oxford University Press

Patient informaticians: Turning patient voice into patient action

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JAMIA Open, 0(0), 2018, 1–6 doi: 10.1093/jamiaopen/ooy014 Perspective Perspective Patient informaticians: Turning patient voice into patient action Carolyn Petersen Global Business Solutions, Mayo Clinic, Rochester, Minnesota, USA Corresponding Author: Carolyn Petersen, MS, MBI, Global Business Solutions, Mayo Clinic, 200 First St. SW, Rochester, MN 55905 USA (petersen.carolyn@mayo.edu) Received 5 December 2017; Revised 3 April 2018; Accepted 25 April 2018 ABSTRACT Historically, patients have held a passive role within healthcare, seeking consultation from and following the directions of providers and their care teams. However, changes in culture, education, and technology are mak- ing it possible for patients to proactively develop and implement technologies and approaches for health man- agement and quality of life enhancement—to act as patient informaticians. This perspective reviews the societal shifts facilitating the evolution of patient informaticians as discrete actors within healthcare, describes the work of patient informaticians and how this work differs from that of other patient roles (eg, patient advocates), con- siders examples of patient informaticians in action, and defines patient informaticians’ position relative to the healthcare system. Key words: patients, research personnel, consumer health informatics, patient advocacy, citizen science INTRODUCTION initiatives. Heightened awareness of informatics development, test- Informatics has been defined as the science of information, where in- ing, and continuous improvement processes through dissemination formation is defined as data with meaning. Correspondingly, infor- in open access journals has made it possible for hyperengaged maticians study data plus meaning and its usage and effects. Within patients to design and implement tools to meet their health goals. biomedical informatics, principle actors have included healthcare Multiple factors have driven, and now support, the emergence of providers (eg, physicians, nurses, speech therapists), computer scien- patient informaticians. Rising medical costs present an imperative tists and technologists, user interface designers, organizational man- for patients, who may pay higher premiums and deductibles, as well agement professionals, and others. Patients historically have as a greater share of covered services, particularly when forced to benefited from an informatics approach, but have rarely taken an seek care outside limited provider networks. Continuous changes in active role in informatics activities, though consumer health infor- health plan design and availability make it more difficult for some matics as a distinct field has been in development for at least patients to purchase insurance coverage on insurance exchanges or 20 years. Changes in the social, technology, and healthcare envi- through brokers, while those covered under government programs ronments, however, have created an opportunity for patients to ac- may be disqualified due to minimal changes in income or personal tively participate in creating and using data with meaning. Patient circumstances. Uncertainty about future availability of insurance, informaticians have begun taking their place in the field. access to needed members of the care team, and affordability Expansion of the patient role over the past decade has facilitated prompt some patients to seek less tenuous routes to health improve- the emergence of patient informaticians as a branch of medical in- ment than through the predominant healthcare system. formatics. The adoption of shared decision making as a clinical Beyond financial and insurance-related concerns, a greater socie- strategy and the emergence of the participatory medicine movement tal emphasis on taking responsibility for one’s health and being an set the stage for patient-designed, patient-implemented informatics engaged patient is driving patients to reconsider their relationship V The Author(s) 2018. Published by Oxford University Press on behalf of the American Medical Informatics Association. This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com 1 Downloaded from https://academic.oup.com/jamiaopen/advance-article-abstract/doi/10.1093/jamiaopen/ooy014/5001912 by Ed 'DeepDyve' Gillespie user on 12 July 2018 2 JAMIA Open, 2018, Vol. 0, No. 0 with the healthcare system. Patients have long heard that they need PATIENT INFORMATICIANS DEFINED to change their diet, become more active, take their medication as Work that patients do to improve and/or maintain their health has directed, and proactively embrace other healthful practices, but ad- been recognized as a form of background work—work in which work- herence rates remain suboptimal. The marriage of consumer and ers are visible but their effort exists within a “background of expect- pervasive health informatics and the increase in high school students 28 29 ation.” These endeavors, sometimes dubbed “patient work,” take taking mathematics and science courses since 1990 makes it possi- many forms, such as collecting medical records and test results from ble for patients to create solutions to the challenges that previously multiple providers, following up on referral documents, and teaching prevented them from achieving desired health outcomes. residents care practices. Consumer health informatics researchers have Change within the healthcare system, including a growing will- acknowledged the need for and value of a patient work approach. In ingness by providers to recognize patients as researchers and partner their self-directed efforts to restore, maintain, and/or improve their with them to achieve mutual goals, has resulted in greater accep- health through interaction with the healthcare system, patient infor- tance of patient-initiated and patient-developed endeavors. Support maticians extend the function of patient work. for patient access to and control of health data by and about patients Though the work of patient informaticians differs from that of 5,6 is growing within the healthcare system, and healthcare research- engaged patients, it builds upon fundamental patient practices and ers increasingly recognize the value of engaging patients as co- skill sets. Patient informaticians identify unmet health needs, parse 7–9 researchers and identify meaningful, efficacious ways to do so. problems into components that can be addressed through data col- Patient researchers not only can be trained as researchers, but also 10–12 lection and analysis, devise strategies to overcome barriers, collect can function effectively as members of the research team. and analyze data, interpret results, and implement life and/or care Patients ability’ to function as researchers is unsurprising, given that changes to address their identified needs. They define workflows patients have already demonstrated the ability to troubleshoot and 13,14 that address health issues of concern to patients that result in im- solve their own care-related problems. An international panel of proved quality of life and greater satisfaction with the healthcare patient advocates influences health information technology policy system. These workflows may be temporary or permanent, and may and development through work with the Health Technology Assess- arise reactively in response to unmet needs or through proactive ment International’s Patient and Citizen Involvement Interest efforts to achieve patient-defined goals. Group. Patient informaticians’ work differs from other patient work in Too, the growing prevalence of devices and sensors that allow that patient informaticians act not only at directives of the healthcare people to track physiological functions, activity, sleep, and other system but also on imperatives defined by their and other patients’ health-related metrics facilitate a more nuanced understanding of lived experience. Although much of patient informaticians’ work personal health and performance. Patients use personal data to find occurs in an established environment (eg, an office), much of what patterns in their symptoms, gain confidence, and improve communi- they do is unanchored work, taking place in other locations deter- cation about their health with members of their care team. Al- mined by the nature of the tasks. Patient informaticians may analyze though the accuracy of data captured by wearable devices has proven variable, using data from wearables in conjunction with patient work, potentially extending the knowledge base used by tradi- medical measurements has proven successful in identifying Lyme tionally trained researchers and care teams, or may define new forms disease and inflammatory responses. Patients have expressed con- of patient work during the course of personal initiatives. fidence in their ability to use their data to test potential solutions to The activity of patients in today’s healthcare system builds upon personal health problems using mobile technology, and a self- the activities of patients who were engaged before them, and the experimentation framework lays out a path for teaching patients patients of today both benefit and incur harm from previous events. 18 32 how to do so. Reflexivity, the observation and consideration of one’s actions, is Through 2016, US$5.4 billion was invested in digital health one lens through which patient engagement with the healthcare sys- 19 33 start-ups worldwide. Under the Software Pre-Certification Pilot tem has been studied. From this perspective, patients position Program, the US Food & Drug Administration (FDA) will evaluate themselves when writing about their health and health care experi- both the software developer and the product as FDA develops tool ences, and their goals may vary, perhaps substantially, from the evaluation criteria, which may support research and development goals of those operating the Web sites to which they contribute. Pa- by patient informaticians. FDA now supports manufacturers’ shar- tient informations do reflect upon their activity and assume specific ing of patient-specific information—“information unique to an indi- positions relative to the healthcare system and other patients. How- vidual patient or unique to that patient’s treatment or diagnosis that ever, they react not to opportunities offered by others within some has been recorded, stored, processed, retrieved, and/or derived from overt or covert framework created by others, but rather, respond to a legally marketed medical device”—with patients at their request. needs lived by themselves or others they care about without regard Though manufacturers aren’t required to share patient data with for or reference to others’ agendas. Furthermore, patient informati- patients, manufacturers can no longer argue that regulatory con- cians do not compare their experiences with those of others, as do cerns prevent them from sharing data, which has been a barrier for patients sharing personal experiences via the Web and social media, patients seeking personal data for digital tool research and develop- but instead define and initiate their own experiences within the con- ment. Global type 1 diabetes research funder JDRF has since an- text of their own goals. nounced an initiative for development of open protocols for Patient informatics may appear to have much in common with 22–25 artificial pancreas technology, an approach co-developed by the participatory medicine, which has been defined as a movement in parent of a patient that patients have used to more easily access per- which patients and health professionals actively collaborate and en- 26 34 sonal data and/or control automated insulin delivery. And most courage one another as full partners in care. Patients participate in importantly, patients themselves want access to the data generated managing (or choosing not to manage) their health, though not all by devices they use to better engage with their care team and manage patients are “all in” to the same degree. In practice, many others their health. (eg, payors, health policy makers) work with patients and health Downloaded from https://academic.oup.com/jamiaopen/advance-article-abstract/doi/10.1093/jamiaopen/ooy014/5001912 by Ed 'DeepDyve' Gillespie user on 12 July 2018 JAMIA Open, 2018, Vol. 0, No. 0 3 35 43 professionals as co-managers of health. Although patient informa- The Nightscout Project was launched by a parent who wanted ticians may work with their care team to implement self-developed to access data flowing through the continuous glucose monitoring 44,45 health management practices and strategies, players such as health (CGM) system used by his 4-year-old child. The ability to con- policy makers are unlikely to actively participate in patient infor- tinuously monitor a child’s blood glucose level without disturbing matics. the child’s sleep provides improved quality of life, better glucose Patients engage with the healthcare system in many ways, and level control, and the opportunity to live a more typical life, for ex- there may be some overlap in the activities of other groups and those ample by attending sleepovers at friends’ homes. The ability to of patient informaticians. However, there are also important differen- download blood glucose data to personal devices such as smart- ces that support differentiation of patient informaticians from others: phones has been recognized as a potential factor in better glycemic control. In the Nightscout case, the parent hacked into the CGM Patient informaticians differ from clinical informaticians in that system and wrote code that provided access to the CGM data via patient informaticians collect medical, health-related, environmen- mobile, wearable, and web-based interfaces. This approach allowed tal, and other data to address health and quality of life issues. the parent to monitor the child at school, during activities, and while Clinical informaticians work across the healthcare delivery system asleep without unduly burdening either parent or child. Others who “to improve outcomes, lower costs, increase safety and promote have type 1 diabetes were interested in using this technology, so the the use of high-quality services.” Patient informaticians act parent created the Nightscout Project Web site, publishing the code across a broad spectrum of landscapes (eg, home, community, in an open source format. As word spread about the work via social schools, worksites) to achieve outcome-focused goals. media, others around the world who have type 1 diabetes began us- Patient informaticians differ from citizen scientists in that patient ing the information to create devices for their use, sometimes hosting informaticians collect data focused on specific health and quality of “build parties.” life issues. Citizen scientists collect large quantities of data to ad- The development of a system to detect the filling of ostomy bags dress a broad range of health, science, technology, and other provides another example of patient-driven informatics. Even when issues, typically under the supervision of career scientists and po- placed and managed with care, ostomy bags can leak, causing em- tentially with the goal of effecting change at the global level. Such barrassment and inconvenience and, potentially, health issues. Using data gathering frequently occurs over a long period of time (eg, dec- a cell phone battery and a flex sensor from a video game, a patient ades) and involves members of the public who do not know each developed the 11Health sensor to alert him when his ostomy bag other and have no connection to each other beyond project data was full and required changing. The patient then navigated the 38,39 collection. In contrast, patient informaticians work within an United States and United Kingdom regulatory systems to commer- established community linked by a shared health condition and cialize the device so that it could be made available to others. may aim to develop an individualized solution to a personal health Though technology and software development skills were neces- concern rather than a scalable solution to a medical problem. sary to create the Nightscout system and 11Health ostomy bag sen- Patient informaticians differ from e-patients in that patient infor- sor, patient informaticians need not possess technology development maticians may collect and share data electronically, within or skills to undertake patient informatics work. For example, a patient outside the established medical system, to find answers to broad informatician who has Raynaud’s syndrome might wish to better health and quality of life concerns. E-patients work directly with understand the conditions that trigger episodes of cold and numb- members of their care team to address medical and/or health ness in her extremities so that she could regularly exercise outside. issues using digital tools. To do this, she could collect precise measurements using a home Patient informaticians differ from patient advocates in that pa- weather station that transmits temperature, humidity, wind velocity tient informaticians primarily use technology to address real-life and direction, and precipitation readings to her personal computer issues in real time. Patient advocates perform a broad range of during the times she wishes to exercise. She could record the cloth- tasks that directly or indirectly support patients or reduce bar- ing worn during each session, perceived extremity sensation and riers patients face, such as raising awareness, lobbying legislative comfort levels, rate of perceived exertion, walking/running time and bodies, raising and allocating funds, influencing research design, distance, and other variables of interest. She could then graph pressuring payors to reimburse costs of medical care, promoting weather variables known to trigger episodes against performance clinical trials and recruiting participants, disseminating research and sensation variables to determine the most effective clothing in findings, developing online support communities, and others. each set of conditions encountered during exercise, which would al- Patient informaticians differ from self-trackers in that patient low her to select appropriate clothing to prevent or mitigate the se- informaticians structure data collection, analysis, and future verity of Raynaud’s episodes. She also could work with others who work to answer specific questions. Self-trackers gather personal experience similar challenges (eg, those who have systemic lupus data within defined domains (eg, exercise, sleep) with the goal of erythematosus, peripheral neuropathy) to implement neighborhood- learning more about how their body works, rather than creating specific guidelines, perhaps meeting with others in a group spon- scopable solutions to specific health problems. sored by a local healthcare facility. In this way, personal efforts to solve personal health problems can evolve into initiatives that sup- port population health study and management, perhaps in conjunc- PATIENT INFORMATICIANS AT WORK tion with health care institutions. Patient informaticians use self-collected data to address real-world concerns. The union of personal health experience, critical thinking, MORE THAN ENGAGED PATIENTS and subject matter expertise inform medical device development and lifestyle management for improved health and quality of life. The Patient engagement has been the subject of increasing interest and following examples illustrate the problem-solving approaches pa- study during the past 2 decades. Although the term is loosely de- tient informaticians may take. fined, it has come to represent a broad spectrum of activities ranging Downloaded from https://academic.oup.com/jamiaopen/advance-article-abstract/doi/10.1093/jamiaopen/ooy014/5001912 by Ed 'DeepDyve' Gillespie user on 12 July 2018 4 JAMIA Open, 2018, Vol. 0, No. 0 from consultation to partnership and shared leadership. At all lev- funding arrangements such as venture capital and business incuba- els of involvement, patients may be active participants in or passive tors. Ultimately, patient informaticians gain funders’ support on the recipients of interventions. In some instances patient feedback, strength of their innovation, patient expertise, and determination to rather than patient action, foments change undertaken by the health succeed. system or individual institutions within the system. In effect, these Given this fundamental paradigm shift, one might wonder about entities may use patients’ involvement in support of their own goals, the position of patient informaticians relative to the broader health- rather than goals defined by patients. Though engagement is an un- care system. Patient informaticians act in response to the failure of derlying driver of patient informaticians, it is not their primary healthcare institutions to meaningfully grasp and address their focus. health-related needs. Although researchers seek to address patients’ The concept of patient-centeredness in health care is similarly medical and health concerns, a gap often exists between researcher amorphous. An integrative model of patient-centeredness based on and patient priorities. Bioethics frames patients as weak and in analysis of 417 journal articles identified 15 dimensions of patient- need of protection, which may limit harm to the most vulnerable centeredness. Of these, experts identified “patient as a unique per- patients but also prevents benefit to those who are less fragile or son,” “patient involvement in care,” “patient information,” more capable of advocating for themselves. FDA’s willingness to “clinician-patient communication,” and “patient empowerment” as meet with patients to discuss how patient-developed technologies the most important dimensions. Notably, none of these dimen- can be implemented at scope suggests that there may be a pathway sions acknowledges the patient as an active, self-determinant being; for patient informaticians to function in ways traditionally acted by rather, all frame patient-centeredness in reference to the healthcare device manufacturers, software developers, and others with specific, system, an institution, or a provider. Given this fundamental differ- defined technical backgrounds. ence in worldview, it is not surprising that patient-centered out- Relative to healthcare providers, who typically spend many years comes research (PCOR) too may be at odds with the approach taken in highly proscribed training before treating patients, patient infor- by patient informaticians. PCOR researchers employ a variety of re- maticians may have little formal training. Healthcare system stake- search techniques (eg, focus groups, patient advisory councils, sur- holders may argue that this lack of directed education disqualifies veys) that may have little, if anything, to do with patient-defined patients from practicing informatics. Some may even argue that, interaction with the health system or informatics. Though such lacking this formal background, patient informaticians cannot be work may inform and/or complement patient informaticians’ regarded as professionals and/or as professional colleagues. How- efforts, PCOR too fails to place the patient at the center of the ever, it is unlikely that providers will refuse to engage with patients action. who develop tools and methods that support more desirable out- Despite this key difference, some might argue that the Patient- comes, improved health, and/or a more productive patient-provider Centered Outcomes Research Institute (PCORI) and other entities relationship. Patients’ contribution to recognizing, framing, and engaged in similar efforts address many of the goals and priorities of partnering in their care—and even taking the lead—is no longer in patient informaticians, and that as a result the work undertaken by question. The growing acceptance of this reality is facilitating patient informaticians is already being done by PCORI. However, patients’ entr ee into areas of medicine currently the domain of those significant differences in purpose, activities, and outputs exist be- with formal background. Successful development and deployment tween PCORI and patient informaticians. The most critical differ- of patient-developed products, such as the 11Health ostomy bag ence is structural: PCORI seeks to support patient as partners in sensor, is compelling evidence for the value of patient informati- cians. The work undertaken by patient informaticians will contrib- research, but awards research funding to health professionals in aca- ute to the emerging learning healthcare system, and thereby ensure a demic and other health system organizations who define the nature role for patient informaticians in 21st century medicine. of the work to be undertaken and how patients will engage with the funding recipients. Although patients must be involved in PCORI- funded research, they don’t set the research agenda, decide what role(s) patients will play in the work, evaluate the results, identify CONCLUSION next steps, make key decisions, or in other ways act autonomously. Although patient informaticians have yet to achieve the recognition This incongruity extends beyond research methods; when health experienced by informaticians in other branches of informatics, pa- services researchers speak of data sharing, they reference data shar- tient informaticians now act as distinct players within healthcare. ing among health researchers, rather than data sharing between Their efforts establish patients as active, self-determinant beings researchers and patients despite patients’ desire to control the 54,55 attaining functionality not facilitated by current standard-of-care data. In contrast, patient informaticians set the research agenda, approaches. Whether patient informaticians work formally within select or develop methods, conduct the work, analyze the resulting the healthcare system or informally in patient communities, their data, and determine how to proceed based on what has been goal is the same: to improve health outcomes and quality of life by learned. using knowledge and technology in novel ways. In pioneering new As with other informaticians, funding is a key consideration for strategies and tools, patient informaticians convert failure via patient informaticians. Although they may lack dedicated laboratory healthcare system-defined paths to success via self-defined and self- and clinical facilities, through collaboration with clinicians and developed approaches. researchers their work may be supported by traditional funders such 22 44 as the National Institutes of Health, universities, or private foun- dations. Crowdfunding has proven successful as a strategy for cov- ering treatment expenses, and it is rapidly maturing as a source of CONTRIBUTORS medical research funding via sites such as Medstartr and Con- C.P. conceived the ideas and wrote the manuscript. 57,58 sano. Patient informaticians also may have greater freedom and flexibility than researchers in academia to access nontraditional Conflict of interest statement. None declared. Downloaded from https://academic.oup.com/jamiaopen/advance-article-abstract/doi/10.1093/jamiaopen/ooy014/5001912 by Ed 'DeepDyve' Gillespie user on 12 July 2018 JAMIA Open, 2018, Vol. 0, No. 0 5 A mulricentre randomized crossover trial. Lancet 2017; 389 (10067): REFERENCES 369–80. 1. Bernstam EV, Smith JW, Johnson TR. What is biomedical informatics? J 26. JDRF. JDRF Announces New Initiative to Pave Way for Open Protocol Biomed Inform 2010; 43 (1): 104–10. Automated Insulin Delivery Systems. New York, NY: JDRF; 2017.http:// 2. Kaplan B, Brennan PF. 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