Computers in Biology and Medicine 59 (2015) 160–163
Contents lists available at ScienceDirect
Computers in Biology and Medicine journal homepage: www.elsevier.com/locate/cbm
Editorial
Understanding the evolving role of the Personal Health Record art ic l e i nf o Keywords: Personal Health Record Patient portal Electronic health record eHealth e-Health
The idea for this special issue of Computers in Biology and Medicine was triggered by a series of events organized by the biomedical engineering group at the Politecnico di Milano, although both editors have a longstanding research interest in the topic. In our call for papers we sought interdisciplinary and multi-sector contributions, in order to provide a broad range of perspectives on the Personal Health Record, including policy, society, technology and clinical practice, all of which are reflected in the contributions herein. As we move towards the realization of the Digital Agenda for Europe [1], in which it is envisaged that patients will have both the right and the ability to access their medical records using the internet, it is timely to reflect on the evolution and direction of Personal Health Records (PHR) with reference to experiences of different models and future thoughts on how these might evolve in the coming years. The concept of the PHR is not new, and indeed pre-dates the digital era, but in the last decade numerous technological solutions have been proposed to give patients access to their records, to enable them to create and manage their own personal health documentation and to provide shared spaces in which provider and patient-generated records can come together; the most elaborate examples including multi-functional PHR platforms designed to inform, empower, educate and enable communication [2]. This is by no means a universal phenomenon and there is wide variability both across nations and within them, as enthusiasts and richer providers make PHR systems available to their patients, whilst others leave it almost entirely to the patient themselves. The discussion is complicated by the many modes and platforms that are in use, including online portals, smart cards, kiosks and, increasingly, mobiles. As we move towards a world of ubiquitous, always-on phablets and wearable computing in many sectors, medical records in some health systems are still largely paper-based or so highly disaggregated and uncoordinated that certain PHR models are simply unfeasible. The discussion is further complicated by the different terminologies used to describe PHR, despite efforts to try to develop common definitions and standards, with terms such as http://dx.doi.org/10.1016/j.compbiomed.2015.02.008 0010-4825/& 2015 Published by Elsevier Ltd.
Record Access and Patient Portal being used largely synonymously with Personal Health Record by different organizations. Taxonomically and conceptually, one of the fuzziest distinctions is between the higher order concept of the Electronic Health Record and the Personal Health Record. As is evident from some of the articles included here, it is not just a simple matter of organisation-owned vs. patient-owned, as shown in cases underpinned by a co-creation and collaborative management philosophy. Such differences and nuances add a further layer of complexity to the issue of the effectiveness of PHR. While studies of some systems have demonstrated important measurable outcomes, the evidence base remains patchy [3,4], partly because of a failure to deconstruct the components under evaluation but also because such systems are often developed and implemented in routine practice and not as part of a research agenda. Moreover – as is also revealed in this special issue – there has been a frustrating realization that PHR, whilst great in theory, often do not gain the sort of traction with patients that their designers or planners have envisaged [5] and additional work is now underway to try to get a better sense of the groups for whom which features of PHR systems are likely to yield most value, and to build with a more sensitive eye to user and contextual requirements, taking into account historical, cultural, social and psychological requirements in addition to technical and functional ones. The emerging PHR environment also reflects market innovations in digital self-monitoring devices and personal wellness applications, the growing Big Data agenda that is seeking to pull together providerowned records and personal data ecosystems for rich analytics, and the revolution in genomic and translational medicine which will build upon these and generate opportunities for personalized medical treatments. It also reflects the larger digital citizenship agenda, with many countries now considering the integration of health data with other sorts of administrative data accessed through citizens cards and portals, and thus cannot simply be viewed in isolation. Sitting squarely on top is a vast raft of ethical, legal and sociological challenges, for which finding robust solutions is so dependent on engaging patients with their own health data and raising awareness of the potential benefits this can offer for themselves and others [6].
Editorial / Computers in Biology and Medicine 59 (2015) 160–163
In a paper co-authored by the designers of a regional health information system and their academic collaborators, Barbarito et al. [7] describe the Lifelong Personal Health Record developed and implemented in Lombardy; one of the largest and most diverse regions of Italy. Aside from a comprehensive description of the system and its implementation challenges, the paper provides some unique insights into the sorts of factors that may be influential in getting PHR systems to work and scale in practice. The first of these relates to context of need – in this case a widely distributed health care delivery environment; albeit united by a state-sponsored reimbursement system; had been characterized by a heterogeneous ecosystem of providers and information systems, which had historically acted as a barrier to care coordination and quality improvement. The primary driver for the PHR program was thus the need to integrate and rationalize these nodes for the benefit of the patient; in other words it became the platform for an integrated health record, as well as something a little bit more. Central to the vision for the system is the concept of person-centredness, where information is organized with reference to the individual, rather than in separate silos relating to care episodes within particular organizations, thus enabling patient history and trajectories of care to be viewed in one place in order to support effective health management across the lifespan. In this respect the system is not unlike many other integrated health system approaches, where records are united by a unique patient identifier and the middleware to be able to pull them together from disparate host systems, potentially from cradle to grave. What is noteworthy about the Lombardy example is the importance of the patient him/herself for the management of the system. The patient is explicitly seen as the ‘owner’ of their health data and; perhaps most significantly; as the locus of choice about which information may be shared with which sort of provider. Whilst this also echoes other health systems in which the patient nominally owns the record, or may be offered choices about who should be allowed to access it, the level of control appears to be somewhat more advanced than elsewhere, with patients able to not only mask records if they wish, but also to mask evidence that a record has been masked, illustrating the sorts of new dilemmas that we face as a society when trying to balance privacy and choice against safety and accountability. Despite the success of the system as a means of documenting health transactions and improving efficiencies, and its rapid adoption by various stakeholders, getting the two key user groups to buy into the vision and change their behavior has not been straightforward, with GPs failing to complete the patient summaries that are so important for patient understanding, and patients failing to make full use of the opportunities for choice and control offered by their PHR. The authors recognize the need for professional training and for new tools to empower patients to better make sense of and utilize their PHR, as well as the potential of mobile computing platforms to increase accessibility. The paper also illustrates the challenge of differentiating PHR from related systems and concepts and it is apparent that the Lombardy system is both an integrated health record, squarely supporting the care system and a Personal Health Record, in contrast to patient-held records, or patient portals tethered to a provider's own record or collection of records. The differences may be subtle, but they are there. To some extent this may reflect what one might call the ‘social anthropology’ of PHR, mindful of historical, systemic and cultural factors which have led to the prioritization of different information loci or actors in the system. In this case the lifelong PHR and integrated EHR seem to have co-evolved in a way that is different from other places, in which patient record access has been bolted on as an afterthought or personal document management has been an independent activity necessary for the patient to ensure their care is coordinated and decisions shared. Two papers focus on the issues of standards and requirements for PHR. In the first, Genitsaridi et al. [8] take a forensic look at the
161
usability and functionality requirements satisfied by 25 existing PHR systems identified through a search of the international literature. They begin by aligning the PHR concept with the role of the patient as the manager of their health information, whilst acknowledging that other models also exist. The relevance of this perspective becomes clear through their reference to the future role of telemedicine and personalized medicine approaches in patient care, which will undoubtedly generate new needs for personal data curation and have been important priorities for European research and innovation funding. In generating their requirements the authors initially examine three EU FP7 projects in which PHR were involved for somewhat different reasons, in one case to supplement a broader range of patient profiling tools to aid personalized prescribing, in the second as part of a shared e-health space to support care coordination and intelligent alerting, and in the third as part of a semantic integration environment for linking clinical research and care systems (EHR, PHR, clinical trials databases). Based on their analysis of functional, technical and architectural features of existing PHR systems they argue that ‘interconnected solutions’ are functionally superior to tethered and standalone ones but, on the whole, few systems are sufficiently tailored to enable intelligent patient health self-management and sustainability. From the perspective of understanding the place of PHR systems, the comparison between EU projects is noteworthy, suggesting a policy imperative to align the needs of health services, individual citizens and researchers, with PHR being seen as central to this. Arguably, as new digital devices and services generate new personal data sources, the patient may become equally valuable as source of information to the doctors who hold their ‘official’ records, representing a real flipping of the traditional power pyramid from expert to citizen. Moreover, the richer records which such innovations may bring, are also likely to aid the provision of expert care, which is expected to become increasingly tailored and personalized to suit the unique needs of the individual and for which reciprocal benefits from sharing data between clinical, research and personal data environments may potentially be realized. Urbauer et al. [9] look towards the needs of industry; chiefly the Small and Medium Enterprise sector, and consider the challenges of integrating data from personal health devices into the PHR, with reference to the opportunities and barriers represented by the interoperability standards advocated by the Continua Alliance. As they rightly point out “consumers can purchase digital devices for recording health- or wellness-related parameters almost everywhere”, flagging home based monitors, smartphone apps and the new generation of wearables. The paper recognizes the need to improve the flow of accurate information between devices, EHR and PHR in a way that is secure and reliable, and reflects on previous analyses of telemonitoring projects, and consensus exercises with stakeholders, which have sought to articulate the requirements for interoperable PHR. The authors helpfully differentiate and describe several qualitatively types of requirements that should be taken into account when designing PHR: Technical, Security, Legal, Organizational and Social/user but conclude, based on experience, that “non-functional (organizational and social/user) requirements are the most critical factors in providing a successful PHR system”. For example, they draw attention to the risks for privacy presented by devices used by more than one person, the legal uncertainties involved in integrating non-professionally acquired health data into EHR systems, and the fact that experiential factors, such as ‘white coat anxiety’, may influence the readings obtained in a clinic as compare to the home, or that expertise may be required to correctly interpret and act upon different sorts of data. They also recognize that in order for PHR to be successfully adopted they need to be designed in such a way as to truly engage and motivate users and they must be both useful and usable. Comandé et al. [10] also consider legal issues in their analysis of a poll of patients' and general practitioners' attitudes to electronic health records in the city of Livorno. Access to and use of PHR in Italy is patchy and while there are regional islands of excellence,
162
Editorial / Computers in Biology and Medicine 59 (2015) 160–163
elsewhere the major challenge has been in developing the necessary level of digitization and integration to support coordinated, efficient and safe patient care. The survey provides anticipatory signals to future PHR needs and barriers, by revealing an acceptance of EHR by patients and identifying the capacity of patients to identify documentation errors in a way that simply digitizing them does not. Cabitza et al. [11] dig deeper into the question of what features of PHR are likely to be of most value to patients and clinicians, and why PHR often remain unused by patients even when they are available. Apart from the oft reported themes of ease of use and perceived privacy and security, they draw attention to the perceived ‘relative advantage’ of the system, compared with what was previously available. For example, they point to the higher levels of health document maintenance by families in northern Italy, as compared to Germany, with many families doing so using personal computing, and present this as an indicator that northern Italians may be more willing to use and benefit from such systems. More creatively, they stress the potential value of developing new types of PHR that enable rich interactions between care providers and receivers and can be embedded into people's social worlds, proposing the concept of the ‘InterPersonal Health Record’; a shared space between the patient and their care provider which recognizes the importance of collaborative effort for improving health outcomes. The study reported in the paper asked whether patients would value this concept and see it as an advantage in their lives, how they would respond to the idea of informal communications with their care provider, and what ‘killer’ features of PHR might be most likely to contribute to their uptake. Based on interviews and surveys with patients and general practitioners they conclude that the appetite for such socially augmented systems is high, despite minor reservations about the need for patients to set the boundaries of data sharing, in terms of professionals and loved ones, and professional workload issues, although GPs were apparently more concerned with telephone interruptions than increased email traffic. This concept of a socially enriched PHR is a novel and interesting one. However important questions remain about the types of people who might wish to share such rich collaborative spaces with their doctors, about the changing roles of health professionals and patients, and the extent to which citizens might wish to merge healthcare with their social worlds. In another unique and future-focused perspective on the Personal Health Record, Jauhari and Rizvi [12] cast an ‘Indian eye to personalized medicine’ and analyze the potential role and benefits of a patient-held smart card containing health records. Set within the context of medical systems in lower income countries, where patients themselves are typically the fundamental agents for managing, integrating and sharing health records across care providers, electronic PHR, such as in this form, offer unique opportunities and potential benefits. More contentiously, the authors argue for the inclusion of genotypic, phenotypic and environmental information on a ‘g-card’, as a tool for informing personalized medical treatment. At what point it becomes rational to embed such information into a portable record is unclear and, given the low levels of healthcare provision overall in India, the expectation of finding sufficient numbers of doctors with the expertise to decode and appropriately utilize this information is perhaps unrealistic. Nevertheless, the questions the article raises are interesting and worthy of consideration. Doubtless we will soon see greater augmentation of electronic health records with genomic information in higher income countries, as personalized and precision medicine continue to dominate discourses in biomedical research and innovation, and we are certainly moving in the direction of point-ofcare genetic screening tools that may provide opportunities for more targeted interventions. Likewise some patients may have a strong desire to hold such data, such as those with rare conditions or participants in bio-banking projects who may wish to be closer to their records. However the potential for such data to be lost or
misused also generates a higher order of risk than other sorts of medical information, not only to the confidentiality of the patients but also to their families and future generations for whom the sorts of inferences that can be made from genetic data may have damaging social consequences, and thus the ethical, social and legal implications of such innovations will need to be thoroughly researched in order to demonstrate their acceptability [13]. The ‘wildcard’ addition to the issue is a paper on digital medicines reconciliation by Zhu and Cimino [14], which is somewhat out with the topic, but addresses an important issue for patient safety that is also being discussed in the context of PHR. The reader may wish to reflect on the role of patients themselves as agents of medication reconciliation, which will be possible if they are given the right information and tools to be able to achieve this [15]. In the study of Italian GPs reported by Comandé [10], one telling observation was that clinicians who used EHR for prescribing did not attribute blame to themselves when an error was discovered by pharmacy staff or patients, but rather to the system, illustrating the potential value of empowering patients to check their own records. Taken as a whole, and with reference to related work in the field, we believe that this Special Issue of CMB provides a rich source of ideas and experiences that will help to generate new thoughts about and research on Personal Health Records, in their many forms. While the concept has been around for some time we have entered a period of more rapid innovation and greater adoption of core systems, which may soon enable the ‘transformational’ promise of PHR to be finally realized. The primary challenges are around understanding the right fit of systems to the needs, desires and lifestyles of their users, appreciating that the patients most likely to value and benefit from these technologies may be highly stratified and thus require different options, finding new ways to move beyond basic record access to more facilitative and collaborative engagement, keeping pace with the opportunities presented by the sorts of innovations that fill our technology stores, and recognizing the potential for improvements in personalization and self-care that these may provide. Doing so in a way that makes best use of robust technology and security standards and which is socially and legally acceptable to the citizen, as well as ensuring that PHR interfaces are usable, features useful and platforms engaging, will be vital for capitalizing on these new opportunities. As policymakers worldwide align their agendas for efficient information-driven health systems, patient empowerment for self-management [16] and economic and social value derivation from Big Data, the incentives for improving and scaling PHR systems are very much in evidence. References [1] European Commission. Digital Agenda for Europe. Action 75: Give Europeans secure online access to their medical health data and achieve widespread telemedicine deployment. 〈http://ec.europa.eu/digital-agenda/en/pillar-vii-ict-ena bled-benefits-eu-society/action-75-give-europeans-secure-online-access-their〉. [2] C. Pagliari, D. Detmer, P. Singleton, Potential of electronic personal health records, Br. Med. J. 335 (7615) (2007) 330–333. [3] T. Davis Giardina, S. Menon, D.E. Parrish, D.F. Sittig, H. Singh, Patient access to medical records and healthcare outcomes: a systematic review, J. Am. Med. Inf. Assoc. 21 (4) (2014) 737–741. [4] C.S. Kruse, K. Bolton, G. Freriks, The effect of patient portals on quality outcomes and its implications to meaningful use: a systematic review, J. Med. Internet Res. 17 (2) (2015) e44. [5] A. Jabour, J.F. Jones, Facilitators and barriers to patients' engagement with Personal Health Records: systematic review, in: I.N.C. Stephanidis, M. Antona (Eds.), UAHCI/HCII 2013, Part III, LNCS 8011, Springer-Verlag, Berlin Heidelberg, 2013, pp. 472–481. [6] S. Davidson, S. Cunningham-Burley, Pagliari C. Aitken, Laurie G. Sethi, et al., Public acceptability of data sharing between the public, private and third sectors for research purposes, Scott. Gov. Soc. Res. (2013) 〈http://www.scot land.gov.uk/Resource/0043/00435458.pdf〉. (ISSN 2045-6964 ISBN 978-178256-953-4). [7] F. Barbarito, et al., Implementing the lifelong personal health record in a regionalised health information system: the case of Lombardy, Italy, Comput.
Editorial / Computers in Biology and Medicine 59 (2015) 160–163
[8]
[9]
[10]
[11]
[12]
[13]
Biol. Med. (2013), http://dx.doi.org/10.1016/j.compbiomed.2013.10.021 [Epub ahead of print]. I. Genitsaridi, et al., Evaluation of personal health record systems through the lenses of EC research projects, Comput. Biol. Med. (2013), http://dx.doi.org/ 10.1016/j.compbiomed.2013.11.004 [Epub ahead of print]. P. Urbauer, et al., Applicability of IHE/Continua components for PHR systems: learning from experiences, Comput. Biol. Med. (2013), http://dx.doi.org/ 10.1016/j.compbiomed.2013.12.003 [Epub ahead of print]. G. Comandé, et al., An empirical study of healthcare providers and patients' perceptions of electronic health records, Comput. Biol. Med. (2014), http://dx. doi.org/10.1016/j.compbiomed.2014.01.011 [Epub ahead of print]. F. Cabitza, et al., User-driven prioritization of features for a prospective InterPersonal Health Record: perceptions from the Italian context, Comput. Biol. Med. (2014), http://dx.doi.org/10.1016/j.compbiomed.2014.03.009 [Epub ahead of print]. S. Jauhari, S.A.M. Rizvi, An Indian eye to personalized medicine, Comput. Biol. Med. (2014), http://dx.doi.org/10.1016/j.compbiomed.2014.07.001 [Epub ahead of print]. R. Hazin, K.B. Brothers, B.A. Malin, B.A. Koenig, S.C. Sanderson, M.A. Rothstein, M.S. Williams, E.W. Clayton, I.J. Kullo, Ethical, legal, and social implications of incorporating genomic information into electronic health records, Genet. Med. 15 (10) (2013) 810–816.
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[14] X. Zhu, J.J. Cimino, Clinicians' evaluation of computer-assisted medication summarization of electronic medical records, Comput. Biol. Med. (2013), http://dx.doi. org/10.1016/j.compbiomed.2013.12.006 [Epub ahead of print]. [15] A. Agrawal, Medication errors: prevention using information technology, Br. J. Clin. Pharmacol. 67 (6) (2009) 681–686. [16] L. Ricciardi, F. Mostashari, J. Murphy, J.G. Daniel, E.P. Siminerio, A national action plan to support consumer engagement via e-health, Health Aff. (Millwood) 32 (2) (2013) 376–384.
Francesco Pinciroli e-Health Lab, Dipartimento di Electronica e Informazione Bioingegneria Politecnico di Milano, Piazza Leonardo da Vinci 32, 20133 Milan, Italy Claudia Pagliari n eHealth Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh EH8 9AG, United Kingdom
n
Corresponding author.
©2015 Elsevier
Contents lists available at ScienceDirect
Computers in Biology and Medicine journal homepage: www.elsevier.com/locate/cbm
Editorial
Understanding the evolving role of the Personal Health Record art ic l e i nf o Keywords: Personal Health Record Patient portal Electronic health record eHealth e-Health
The idea for this special issue of Computers in Biology and Medicine was triggered by a series of events organized by the biomedical engineering group at the Politecnico di Milano, although both editors have a longstanding research interest in the topic. In our call for papers we sought interdisciplinary and multi-sector contributions, in order to provide a broad range of perspectives on the Personal Health Record, including policy, society, technology and clinical practice, all of which are reflected in the contributions herein. As we move towards the realization of the Digital Agenda for Europe [1], in which it is envisaged that patients will have both the right and the ability to access their medical records using the internet, it is timely to reflect on the evolution and direction of Personal Health Records (PHR) with reference to experiences of different models and future thoughts on how these might evolve in the coming years. The concept of the PHR is not new, and indeed pre-dates the digital era, but in the last decade numerous technological solutions have been proposed to give patients access to their records, to enable them to create and manage their own personal health documentation and to provide shared spaces in which provider and patient-generated records can come together; the most elaborate examples including multi-functional PHR platforms designed to inform, empower, educate and enable communication [2]. This is by no means a universal phenomenon and there is wide variability both across nations and within them, as enthusiasts and richer providers make PHR systems available to their patients, whilst others leave it almost entirely to the patient themselves. The discussion is complicated by the many modes and platforms that are in use, including online portals, smart cards, kiosks and, increasingly, mobiles. As we move towards a world of ubiquitous, always-on phablets and wearable computing in many sectors, medical records in some health systems are still largely paper-based or so highly disaggregated and uncoordinated that certain PHR models are simply unfeasible. The discussion is further complicated by the different terminologies used to describe PHR, despite efforts to try to develop common definitions and standards, with terms such as http://dx.doi.org/10.1016/j.compbiomed.2015.02.008 0010-4825/& 2015 Published by Elsevier Ltd.
Record Access and Patient Portal being used largely synonymously with Personal Health Record by different organizations. Taxonomically and conceptually, one of the fuzziest distinctions is between the higher order concept of the Electronic Health Record and the Personal Health Record. As is evident from some of the articles included here, it is not just a simple matter of organisation-owned vs. patient-owned, as shown in cases underpinned by a co-creation and collaborative management philosophy. Such differences and nuances add a further layer of complexity to the issue of the effectiveness of PHR. While studies of some systems have demonstrated important measurable outcomes, the evidence base remains patchy [3,4], partly because of a failure to deconstruct the components under evaluation but also because such systems are often developed and implemented in routine practice and not as part of a research agenda. Moreover – as is also revealed in this special issue – there has been a frustrating realization that PHR, whilst great in theory, often do not gain the sort of traction with patients that their designers or planners have envisaged [5] and additional work is now underway to try to get a better sense of the groups for whom which features of PHR systems are likely to yield most value, and to build with a more sensitive eye to user and contextual requirements, taking into account historical, cultural, social and psychological requirements in addition to technical and functional ones. The emerging PHR environment also reflects market innovations in digital self-monitoring devices and personal wellness applications, the growing Big Data agenda that is seeking to pull together providerowned records and personal data ecosystems for rich analytics, and the revolution in genomic and translational medicine which will build upon these and generate opportunities for personalized medical treatments. It also reflects the larger digital citizenship agenda, with many countries now considering the integration of health data with other sorts of administrative data accessed through citizens cards and portals, and thus cannot simply be viewed in isolation. Sitting squarely on top is a vast raft of ethical, legal and sociological challenges, for which finding robust solutions is so dependent on engaging patients with their own health data and raising awareness of the potential benefits this can offer for themselves and others [6].
Editorial / Computers in Biology and Medicine 59 (2015) 160–163
In a paper co-authored by the designers of a regional health information system and their academic collaborators, Barbarito et al. [7] describe the Lifelong Personal Health Record developed and implemented in Lombardy; one of the largest and most diverse regions of Italy. Aside from a comprehensive description of the system and its implementation challenges, the paper provides some unique insights into the sorts of factors that may be influential in getting PHR systems to work and scale in practice. The first of these relates to context of need – in this case a widely distributed health care delivery environment; albeit united by a state-sponsored reimbursement system; had been characterized by a heterogeneous ecosystem of providers and information systems, which had historically acted as a barrier to care coordination and quality improvement. The primary driver for the PHR program was thus the need to integrate and rationalize these nodes for the benefit of the patient; in other words it became the platform for an integrated health record, as well as something a little bit more. Central to the vision for the system is the concept of person-centredness, where information is organized with reference to the individual, rather than in separate silos relating to care episodes within particular organizations, thus enabling patient history and trajectories of care to be viewed in one place in order to support effective health management across the lifespan. In this respect the system is not unlike many other integrated health system approaches, where records are united by a unique patient identifier and the middleware to be able to pull them together from disparate host systems, potentially from cradle to grave. What is noteworthy about the Lombardy example is the importance of the patient him/herself for the management of the system. The patient is explicitly seen as the ‘owner’ of their health data and; perhaps most significantly; as the locus of choice about which information may be shared with which sort of provider. Whilst this also echoes other health systems in which the patient nominally owns the record, or may be offered choices about who should be allowed to access it, the level of control appears to be somewhat more advanced than elsewhere, with patients able to not only mask records if they wish, but also to mask evidence that a record has been masked, illustrating the sorts of new dilemmas that we face as a society when trying to balance privacy and choice against safety and accountability. Despite the success of the system as a means of documenting health transactions and improving efficiencies, and its rapid adoption by various stakeholders, getting the two key user groups to buy into the vision and change their behavior has not been straightforward, with GPs failing to complete the patient summaries that are so important for patient understanding, and patients failing to make full use of the opportunities for choice and control offered by their PHR. The authors recognize the need for professional training and for new tools to empower patients to better make sense of and utilize their PHR, as well as the potential of mobile computing platforms to increase accessibility. The paper also illustrates the challenge of differentiating PHR from related systems and concepts and it is apparent that the Lombardy system is both an integrated health record, squarely supporting the care system and a Personal Health Record, in contrast to patient-held records, or patient portals tethered to a provider's own record or collection of records. The differences may be subtle, but they are there. To some extent this may reflect what one might call the ‘social anthropology’ of PHR, mindful of historical, systemic and cultural factors which have led to the prioritization of different information loci or actors in the system. In this case the lifelong PHR and integrated EHR seem to have co-evolved in a way that is different from other places, in which patient record access has been bolted on as an afterthought or personal document management has been an independent activity necessary for the patient to ensure their care is coordinated and decisions shared. Two papers focus on the issues of standards and requirements for PHR. In the first, Genitsaridi et al. [8] take a forensic look at the
161
usability and functionality requirements satisfied by 25 existing PHR systems identified through a search of the international literature. They begin by aligning the PHR concept with the role of the patient as the manager of their health information, whilst acknowledging that other models also exist. The relevance of this perspective becomes clear through their reference to the future role of telemedicine and personalized medicine approaches in patient care, which will undoubtedly generate new needs for personal data curation and have been important priorities for European research and innovation funding. In generating their requirements the authors initially examine three EU FP7 projects in which PHR were involved for somewhat different reasons, in one case to supplement a broader range of patient profiling tools to aid personalized prescribing, in the second as part of a shared e-health space to support care coordination and intelligent alerting, and in the third as part of a semantic integration environment for linking clinical research and care systems (EHR, PHR, clinical trials databases). Based on their analysis of functional, technical and architectural features of existing PHR systems they argue that ‘interconnected solutions’ are functionally superior to tethered and standalone ones but, on the whole, few systems are sufficiently tailored to enable intelligent patient health self-management and sustainability. From the perspective of understanding the place of PHR systems, the comparison between EU projects is noteworthy, suggesting a policy imperative to align the needs of health services, individual citizens and researchers, with PHR being seen as central to this. Arguably, as new digital devices and services generate new personal data sources, the patient may become equally valuable as source of information to the doctors who hold their ‘official’ records, representing a real flipping of the traditional power pyramid from expert to citizen. Moreover, the richer records which such innovations may bring, are also likely to aid the provision of expert care, which is expected to become increasingly tailored and personalized to suit the unique needs of the individual and for which reciprocal benefits from sharing data between clinical, research and personal data environments may potentially be realized. Urbauer et al. [9] look towards the needs of industry; chiefly the Small and Medium Enterprise sector, and consider the challenges of integrating data from personal health devices into the PHR, with reference to the opportunities and barriers represented by the interoperability standards advocated by the Continua Alliance. As they rightly point out “consumers can purchase digital devices for recording health- or wellness-related parameters almost everywhere”, flagging home based monitors, smartphone apps and the new generation of wearables. The paper recognizes the need to improve the flow of accurate information between devices, EHR and PHR in a way that is secure and reliable, and reflects on previous analyses of telemonitoring projects, and consensus exercises with stakeholders, which have sought to articulate the requirements for interoperable PHR. The authors helpfully differentiate and describe several qualitatively types of requirements that should be taken into account when designing PHR: Technical, Security, Legal, Organizational and Social/user but conclude, based on experience, that “non-functional (organizational and social/user) requirements are the most critical factors in providing a successful PHR system”. For example, they draw attention to the risks for privacy presented by devices used by more than one person, the legal uncertainties involved in integrating non-professionally acquired health data into EHR systems, and the fact that experiential factors, such as ‘white coat anxiety’, may influence the readings obtained in a clinic as compare to the home, or that expertise may be required to correctly interpret and act upon different sorts of data. They also recognize that in order for PHR to be successfully adopted they need to be designed in such a way as to truly engage and motivate users and they must be both useful and usable. Comandé et al. [10] also consider legal issues in their analysis of a poll of patients' and general practitioners' attitudes to electronic health records in the city of Livorno. Access to and use of PHR in Italy is patchy and while there are regional islands of excellence,
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elsewhere the major challenge has been in developing the necessary level of digitization and integration to support coordinated, efficient and safe patient care. The survey provides anticipatory signals to future PHR needs and barriers, by revealing an acceptance of EHR by patients and identifying the capacity of patients to identify documentation errors in a way that simply digitizing them does not. Cabitza et al. [11] dig deeper into the question of what features of PHR are likely to be of most value to patients and clinicians, and why PHR often remain unused by patients even when they are available. Apart from the oft reported themes of ease of use and perceived privacy and security, they draw attention to the perceived ‘relative advantage’ of the system, compared with what was previously available. For example, they point to the higher levels of health document maintenance by families in northern Italy, as compared to Germany, with many families doing so using personal computing, and present this as an indicator that northern Italians may be more willing to use and benefit from such systems. More creatively, they stress the potential value of developing new types of PHR that enable rich interactions between care providers and receivers and can be embedded into people's social worlds, proposing the concept of the ‘InterPersonal Health Record’; a shared space between the patient and their care provider which recognizes the importance of collaborative effort for improving health outcomes. The study reported in the paper asked whether patients would value this concept and see it as an advantage in their lives, how they would respond to the idea of informal communications with their care provider, and what ‘killer’ features of PHR might be most likely to contribute to their uptake. Based on interviews and surveys with patients and general practitioners they conclude that the appetite for such socially augmented systems is high, despite minor reservations about the need for patients to set the boundaries of data sharing, in terms of professionals and loved ones, and professional workload issues, although GPs were apparently more concerned with telephone interruptions than increased email traffic. This concept of a socially enriched PHR is a novel and interesting one. However important questions remain about the types of people who might wish to share such rich collaborative spaces with their doctors, about the changing roles of health professionals and patients, and the extent to which citizens might wish to merge healthcare with their social worlds. In another unique and future-focused perspective on the Personal Health Record, Jauhari and Rizvi [12] cast an ‘Indian eye to personalized medicine’ and analyze the potential role and benefits of a patient-held smart card containing health records. Set within the context of medical systems in lower income countries, where patients themselves are typically the fundamental agents for managing, integrating and sharing health records across care providers, electronic PHR, such as in this form, offer unique opportunities and potential benefits. More contentiously, the authors argue for the inclusion of genotypic, phenotypic and environmental information on a ‘g-card’, as a tool for informing personalized medical treatment. At what point it becomes rational to embed such information into a portable record is unclear and, given the low levels of healthcare provision overall in India, the expectation of finding sufficient numbers of doctors with the expertise to decode and appropriately utilize this information is perhaps unrealistic. Nevertheless, the questions the article raises are interesting and worthy of consideration. Doubtless we will soon see greater augmentation of electronic health records with genomic information in higher income countries, as personalized and precision medicine continue to dominate discourses in biomedical research and innovation, and we are certainly moving in the direction of point-ofcare genetic screening tools that may provide opportunities for more targeted interventions. Likewise some patients may have a strong desire to hold such data, such as those with rare conditions or participants in bio-banking projects who may wish to be closer to their records. However the potential for such data to be lost or
misused also generates a higher order of risk than other sorts of medical information, not only to the confidentiality of the patients but also to their families and future generations for whom the sorts of inferences that can be made from genetic data may have damaging social consequences, and thus the ethical, social and legal implications of such innovations will need to be thoroughly researched in order to demonstrate their acceptability [13]. The ‘wildcard’ addition to the issue is a paper on digital medicines reconciliation by Zhu and Cimino [14], which is somewhat out with the topic, but addresses an important issue for patient safety that is also being discussed in the context of PHR. The reader may wish to reflect on the role of patients themselves as agents of medication reconciliation, which will be possible if they are given the right information and tools to be able to achieve this [15]. In the study of Italian GPs reported by Comandé [10], one telling observation was that clinicians who used EHR for prescribing did not attribute blame to themselves when an error was discovered by pharmacy staff or patients, but rather to the system, illustrating the potential value of empowering patients to check their own records. Taken as a whole, and with reference to related work in the field, we believe that this Special Issue of CMB provides a rich source of ideas and experiences that will help to generate new thoughts about and research on Personal Health Records, in their many forms. While the concept has been around for some time we have entered a period of more rapid innovation and greater adoption of core systems, which may soon enable the ‘transformational’ promise of PHR to be finally realized. The primary challenges are around understanding the right fit of systems to the needs, desires and lifestyles of their users, appreciating that the patients most likely to value and benefit from these technologies may be highly stratified and thus require different options, finding new ways to move beyond basic record access to more facilitative and collaborative engagement, keeping pace with the opportunities presented by the sorts of innovations that fill our technology stores, and recognizing the potential for improvements in personalization and self-care that these may provide. Doing so in a way that makes best use of robust technology and security standards and which is socially and legally acceptable to the citizen, as well as ensuring that PHR interfaces are usable, features useful and platforms engaging, will be vital for capitalizing on these new opportunities. As policymakers worldwide align their agendas for efficient information-driven health systems, patient empowerment for self-management [16] and economic and social value derivation from Big Data, the incentives for improving and scaling PHR systems are very much in evidence. References [1] European Commission. Digital Agenda for Europe. Action 75: Give Europeans secure online access to their medical health data and achieve widespread telemedicine deployment. 〈http://ec.europa.eu/digital-agenda/en/pillar-vii-ict-ena bled-benefits-eu-society/action-75-give-europeans-secure-online-access-their〉. [2] C. Pagliari, D. Detmer, P. Singleton, Potential of electronic personal health records, Br. Med. J. 335 (7615) (2007) 330–333. [3] T. Davis Giardina, S. Menon, D.E. Parrish, D.F. Sittig, H. Singh, Patient access to medical records and healthcare outcomes: a systematic review, J. Am. Med. Inf. Assoc. 21 (4) (2014) 737–741. [4] C.S. Kruse, K. Bolton, G. Freriks, The effect of patient portals on quality outcomes and its implications to meaningful use: a systematic review, J. Med. Internet Res. 17 (2) (2015) e44. [5] A. Jabour, J.F. Jones, Facilitators and barriers to patients' engagement with Personal Health Records: systematic review, in: I.N.C. Stephanidis, M. Antona (Eds.), UAHCI/HCII 2013, Part III, LNCS 8011, Springer-Verlag, Berlin Heidelberg, 2013, pp. 472–481. [6] S. Davidson, S. Cunningham-Burley, Pagliari C. Aitken, Laurie G. Sethi, et al., Public acceptability of data sharing between the public, private and third sectors for research purposes, Scott. Gov. Soc. Res. (2013) 〈http://www.scot land.gov.uk/Resource/0043/00435458.pdf〉. (ISSN 2045-6964 ISBN 978-178256-953-4). [7] F. Barbarito, et al., Implementing the lifelong personal health record in a regionalised health information system: the case of Lombardy, Italy, Comput.
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Francesco Pinciroli e-Health Lab, Dipartimento di Electronica e Informazione Bioingegneria Politecnico di Milano, Piazza Leonardo da Vinci 32, 20133 Milan, Italy Claudia Pagliari n eHealth Group, Centre for Population Health Sciences, University of Edinburgh, Edinburgh EH8 9AG, United Kingdom
n
Corresponding author.
©2015 Elsevier
