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How is the “public interest” defined in learning networks?
How is the “public interest” defined in learning networks? by Michael M. Burgess, PhD Networks are clearly an important feature of public sector management, with mutually agreed on objectives and measures that necessarily depend on notions of the public good and how to assess it. In particular, the mantra “leadership without ownership” referred to by Tholl and Lindstrom presumes the capacity to induce cooperative behaviour based on common goals. For example, consider “learning health systems” that propose to organize multiple sources of health data to enable the assessment of system or networkwide performance as well as components from particular interventions to public health programs.1 Fiscal responsibility and reasonable questions about the cost-effectiveness of healthcare systems and interventions create a responsibility to assess performance. Recently established computational capacity makes it possible to manage large amounts of data and more effectively assess institutional and system performance, strengthening claims of benefit. Two notions of public interest come into conflict with these developments: a focus on protecting individual privacy and another on enhancing assessment with the goal of more effective, efficient, and potentially more fair distribution of healthcare. There are proposals from ethics and health system specialists to alter the relationship between patients and the healthcare system to require that patients permit the use of their health data for wide administrative and research purposes as a condition of their receipt of healthcare.2 Although the benefits of wide access to networked data seem undeniable, there is considerable discussion about the justifiability of extending exceptions or practices of informed consent to enable learning health systems. From the W. Maurice Young Centre for Applied Ethics, UBC Faculty of Medicine School of Population and Public Health, Vancouver, British Columbia, Canada. Corresponding author: Michael M. Burgess, PhD, UBC Faculty of Medicine Southern Medical Program, 3333 University Way-RHS, Kelowna, British Columbia, Canada V1V 1V7. (e-mail: by [email protected]) Healthcare Management Forum 2014 27:143–144 0840-4704/$ - see front matter & 2014 Canadian College of Health Leaders. Published by Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.hcmf.2014.08.003
Justifications of the trade-off between these two public interests take different forms. Network-wide access to patient data is often justified with reference to an administrative exception to informed consent for institutional assessment and functions such as billing, extended to access to linked patient data for a network of organizations. A more explicit recognition of the challenge assesses whether the possible gains in economy and effectiveness of the healthcare system justify the suspension of usual practices of informed consent and privacy protection. A third approach recognizes that approaches to privacy and access to health records must change, and that therefore patients should be involved. One example is the Canadian Institutes for Health Research “strategy for patient-oriented research” that proposes patient involvement in networks, for example, to assess and improve primary and integrated healthcare innovation.3 A fourth approach might be less accommodating of the goals of these networks, characterized by the 2014 BC Privacy Commissioner's report promoting principles that require restriction of information collection to known and specified purposes and notification of individuals and some degree of granularity of control over who has access to what kinds of information.4 These are important and legitimately public issues because public funds are used. The organization of public services and trade-offs in privacy may be necessary to assess and improve the health system; the future of healthcare and population health will be shaped by these changes. All of this also implies opportunity costs. However, it is no small challenge to develop approaches to getting informed and widely representative public input. There are good reasons to consider robust involvement of the public on appropriate issues as key to network robustness. As suggested by Roy, Litvak, and Paccaud in this issue, the capacity to reorganize and extend networked data collection and analysis will depend on, among other things, alignment of goals through partnerships and trust. As the effects and operations of networks become more widely known, public and stakeholder interests will become mobilized. As Milward discusses, networks are suited for particular purposes, and resilience depends in part on the capacity to reorganize to
Burgess
maintain legitimacy. Finding ways to appropriately involve public input is one way in which reorganization to maintain legitimacy may manifest. The importance of involving the public beyond patients and experts was illustrated by the announcement that the National Health Service in England would delay the launch of a system sharing health record data collected from general practice offices due to lack of wide support. The postponement is reported to be owing to a failed attempt to inform the public and secure trust. The chief executive of the Association of Medical Research Charities was quoted in the Guardian as saying that although it was a good idea, the plan had been “stymied by its execution.”5 One interpretation is that privacy advocates managed to undermine confidence of public acceptance of the use of their data, usually anonymized. However, it is also possible that the objections were about what the data would be used for, a view supported by concerns about whether data would be shared with, or sold to commercial companies. The point here is that it is not sufficient to assume that the networking across organizations for a common purpose of promoting improved healthcare will lead to proposals that adequately reflect the interests of a diverse public. It is inevitable that the objectives and measures agreed on by a network of organizations will be negotiated and shaped by the participating institutions. Apparently, technical decisions are made based on assumptions that might be shared or negotiated. In the UK National Health System example, there seems to have been assumptions that improving the measurement of treatments and healthcare institutions was a justification to shift to an opt-out method of using patient data rather than the usual informed consent or opt-in. It appears that patient groups and health charities were involved in the design and shared the assessment. Recommendations focused on better explanations and opportunity to opt-out rather than on public involvement in shaping the policies and practices. This is a classic characterization of public distrust as based on a lack of understanding of science, sometimes referred to as the “deficit model of public understanding.”6 Projects around the world have demonstrated that distrust of science is more commonly based on concerns that are not addressed by better understanding of the science. The development of networks to serve public sector agendas needs to facilitate cooperation in ways that include wider public concerns and garner public trust. How does the community, or the diversity of interests that make up any complex contemporary society, get reflected into the agenda of the network when it is so internally focused on building trust and effectiveness within and between organizational participants? In the case of “learning health systems,” what is needed is a kind of new social license between the public and health networks or systems. In this new networked, comprehensively assessed and accountable health network(s), trust of the public/patients will need to shift to accept wide use of personal data for system-wide benefit 144
as a contextual feature of receipt of healthcare. There will need to be wide public trust, not based on understanding the experts, but on articulating concerns and being satisfied with responses, and perhaps having a role in the monitoring and evolution of the networks. Trust cannot be based on the model of individual consent to specified use, but must include clearly articulated ways of making decisions about access to data and of the protections provided to prevent harm from access to private information. One response is to incorporate a form of participatory governance that explicitly includes diverse public interests. This is to be distinguished from public representatives who are only able to reflect their personal position, or patient organizations or advocates who focus on the specific range of concerns of sub-populations. New forms of participatory governance that include well-supported public advisories and include deliberative engagement of publics to inform and design networks that are responsive to public concerns hold some potential to help networks form and operate in a manner that better secures and deserves the public trust. But this requires remembering to direct attention not only internally, to the networking organizations, but outwards, to systematically understand and respond to the wider concerns of the public by giving genuine opportunity for public participation in shaping and assessing networks.7
REFERENCES 1. 〈http://www.iom.edu/Activities/Quality/LearningHealthCare.aspx. 2. Faden RR, Kass NE, Goodman SN, Pronovost P, Tunis S, Beauchamp TL. An ethics framework for a learning health care system: a departure from traditional research ethics and clinical ethics. Hastings Cent Rep 2013;43:S16–S27. http://dx. doi.org/10.1002/hast.134. 3. 〈http://www.cihr-irsc.gc.ca/e/45854.html〉. 4. Office of the Information and Privacy Commissioner for British Columbia. Special report: a prescription for legislative reform: improving privacy protection in BC’s health sector. Available at 〈https://www.oipc.bc.ca/report/special-reports.aspx〉; 2014. See also; Meslin EM, Alpert SA, Carroll AE, Odell JD, Tierney WM, Schwartz PH. Giving patients granular control of personal health information: using an ethics ‘Points to Consider’ to inform informatics system designers. Int J Med Inform 2013;82(12):1136–1143. http://dx.doi. org/10.1016/j.ijmedinf.2013.08.010. 5. 〈http://www.theguardian.com/society/2014/feb/18/nhs-delayssharing-medical-records-care-data〉. 6. Wynne B. Public engagement as a means of restoring public trust in science—hitting the notes, but missing the music?. Community Genet 2006;9(3):211–220. 〈http://www.karger.com/ Article/Abstract/92659〉. 7. Burgess MM. From ‘trust us’ to participatory governance: deliberative publics and science policy Public Underst Sci 2014;23(1):48-52; O’Doherty KC, Burgess MM, Edwards K, et al. From consent to institutions: designing adaptive governance for genomic biobanks. Soc Sci Med 2011;73:367–374. 〈http://www.ncbi.nlm.nih. gov/pubmed/21726926〉.
Healthcare Management Forum Forum Gestion des soins de santé – Fall/Automne 2014
Justifications of the trade-off between these two public interests take different forms. Network-wide access to patient data is often justified with reference to an administrative exception to informed consent for institutional assessment and functions such as billing, extended to access to linked patient data for a network of organizations. A more explicit recognition of the challenge assesses whether the possible gains in economy and effectiveness of the healthcare system justify the suspension of usual practices of informed consent and privacy protection. A third approach recognizes that approaches to privacy and access to health records must change, and that therefore patients should be involved. One example is the Canadian Institutes for Health Research “strategy for patient-oriented research” that proposes patient involvement in networks, for example, to assess and improve primary and integrated healthcare innovation.3 A fourth approach might be less accommodating of the goals of these networks, characterized by the 2014 BC Privacy Commissioner's report promoting principles that require restriction of information collection to known and specified purposes and notification of individuals and some degree of granularity of control over who has access to what kinds of information.4 These are important and legitimately public issues because public funds are used. The organization of public services and trade-offs in privacy may be necessary to assess and improve the health system; the future of healthcare and population health will be shaped by these changes. All of this also implies opportunity costs. However, it is no small challenge to develop approaches to getting informed and widely representative public input. There are good reasons to consider robust involvement of the public on appropriate issues as key to network robustness. As suggested by Roy, Litvak, and Paccaud in this issue, the capacity to reorganize and extend networked data collection and analysis will depend on, among other things, alignment of goals through partnerships and trust. As the effects and operations of networks become more widely known, public and stakeholder interests will become mobilized. As Milward discusses, networks are suited for particular purposes, and resilience depends in part on the capacity to reorganize to
Burgess
maintain legitimacy. Finding ways to appropriately involve public input is one way in which reorganization to maintain legitimacy may manifest. The importance of involving the public beyond patients and experts was illustrated by the announcement that the National Health Service in England would delay the launch of a system sharing health record data collected from general practice offices due to lack of wide support. The postponement is reported to be owing to a failed attempt to inform the public and secure trust. The chief executive of the Association of Medical Research Charities was quoted in the Guardian as saying that although it was a good idea, the plan had been “stymied by its execution.”5 One interpretation is that privacy advocates managed to undermine confidence of public acceptance of the use of their data, usually anonymized. However, it is also possible that the objections were about what the data would be used for, a view supported by concerns about whether data would be shared with, or sold to commercial companies. The point here is that it is not sufficient to assume that the networking across organizations for a common purpose of promoting improved healthcare will lead to proposals that adequately reflect the interests of a diverse public. It is inevitable that the objectives and measures agreed on by a network of organizations will be negotiated and shaped by the participating institutions. Apparently, technical decisions are made based on assumptions that might be shared or negotiated. In the UK National Health System example, there seems to have been assumptions that improving the measurement of treatments and healthcare institutions was a justification to shift to an opt-out method of using patient data rather than the usual informed consent or opt-in. It appears that patient groups and health charities were involved in the design and shared the assessment. Recommendations focused on better explanations and opportunity to opt-out rather than on public involvement in shaping the policies and practices. This is a classic characterization of public distrust as based on a lack of understanding of science, sometimes referred to as the “deficit model of public understanding.”6 Projects around the world have demonstrated that distrust of science is more commonly based on concerns that are not addressed by better understanding of the science. The development of networks to serve public sector agendas needs to facilitate cooperation in ways that include wider public concerns and garner public trust. How does the community, or the diversity of interests that make up any complex contemporary society, get reflected into the agenda of the network when it is so internally focused on building trust and effectiveness within and between organizational participants? In the case of “learning health systems,” what is needed is a kind of new social license between the public and health networks or systems. In this new networked, comprehensively assessed and accountable health network(s), trust of the public/patients will need to shift to accept wide use of personal data for system-wide benefit 144
as a contextual feature of receipt of healthcare. There will need to be wide public trust, not based on understanding the experts, but on articulating concerns and being satisfied with responses, and perhaps having a role in the monitoring and evolution of the networks. Trust cannot be based on the model of individual consent to specified use, but must include clearly articulated ways of making decisions about access to data and of the protections provided to prevent harm from access to private information. One response is to incorporate a form of participatory governance that explicitly includes diverse public interests. This is to be distinguished from public representatives who are only able to reflect their personal position, or patient organizations or advocates who focus on the specific range of concerns of sub-populations. New forms of participatory governance that include well-supported public advisories and include deliberative engagement of publics to inform and design networks that are responsive to public concerns hold some potential to help networks form and operate in a manner that better secures and deserves the public trust. But this requires remembering to direct attention not only internally, to the networking organizations, but outwards, to systematically understand and respond to the wider concerns of the public by giving genuine opportunity for public participation in shaping and assessing networks.7
REFERENCES 1. 〈http://www.iom.edu/Activities/Quality/LearningHealthCare.aspx. 2. Faden RR, Kass NE, Goodman SN, Pronovost P, Tunis S, Beauchamp TL. An ethics framework for a learning health care system: a departure from traditional research ethics and clinical ethics. Hastings Cent Rep 2013;43:S16–S27. http://dx. doi.org/10.1002/hast.134. 3. 〈http://www.cihr-irsc.gc.ca/e/45854.html〉. 4. Office of the Information and Privacy Commissioner for British Columbia. Special report: a prescription for legislative reform: improving privacy protection in BC’s health sector. Available at 〈https://www.oipc.bc.ca/report/special-reports.aspx〉; 2014. See also; Meslin EM, Alpert SA, Carroll AE, Odell JD, Tierney WM, Schwartz PH. Giving patients granular control of personal health information: using an ethics ‘Points to Consider’ to inform informatics system designers. Int J Med Inform 2013;82(12):1136–1143. http://dx.doi. org/10.1016/j.ijmedinf.2013.08.010. 5. 〈http://www.theguardian.com/society/2014/feb/18/nhs-delayssharing-medical-records-care-data〉. 6. Wynne B. Public engagement as a means of restoring public trust in science—hitting the notes, but missing the music?. Community Genet 2006;9(3):211–220. 〈http://www.karger.com/ Article/Abstract/92659〉. 7. Burgess MM. From ‘trust us’ to participatory governance: deliberative publics and science policy Public Underst Sci 2014;23(1):48-52; O’Doherty KC, Burgess MM, Edwards K, et al. From consent to institutions: designing adaptive governance for genomic biobanks. Soc Sci Med 2011;73:367–374. 〈http://www.ncbi.nlm.nih. gov/pubmed/21726926〉.
Healthcare Management Forum Forum Gestion des soins de santé – Fall/Automne 2014