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Cultural changes are needed in medicine if the benefits of technological advances are to benefit healthcare users. The Digital Health Manifesto of 'medical futurist' doctor Bertalan Meskó and 'e-patient' Dave deBronkart, The Patient Will See You Now by Eric Topol and The Patient as CEO by Robin Farmanfarmaian, are among the proliferating warnings of the approaching paradigm shift in medicine, resulting, above all, from technological advances that gives users independent access to exponentially increasing amounts of information about themselves. We question their messages only in suggesting they do not sufficiently shift the focus from 'patient' to 'person' and consequently fail to recognise the need for the credible, efficient, ethical and independent decision support that can ensure the 'democratisation of knowledge' is person empowering, not overpowering. Such decision support can ensure the 'democratisation of decision,' leading to higher quality decisions and fully-informed and preference-based consent to health provider actions. The coming paradigm will therefore be characterised by apomediative ('direct-to-consumer') decision support tools, engaged with by the person in the community to help them make health production decisions for themselves (including whether to consult a healthcare professional or provider), as well as intermediative ('direct-from-clinician') tools, delivered by a health professional in a 'shared decision making' or 'co-creation of health' process. This vision paper elaborates on the implementation of these preference-sensitive decision support tools through the technique of Multi-Criteria Decision Analysis.

Cultural changes are needed in medicine if the benefits of technological advances are to benefit healthcare users. The Digital Health Manifesto of 'medical futurist' doctor Bertalan Meskó and 'e-patient' Dave deBronkart, The Patient Will See You Now by Eric Topol and The Patient as CEO by Robin Farmanfarmaian, are among the proliferating warnings of the approaching paradigm shift in medicine, resulting, above all, from technological advances that gives users independent access to exponentially increasing amounts of information about themselves. We question their messages only in suggesting they do not sufficiently shift the focus from 'patient' to 'person' and consequently fail to recognise the need for the credible, efficient, ethical and independent decision support that can ensure the 'democratisation of knowledge' is person empowering, not overpowering. Such decision support can ensure the 'democratisation of decision,' leading to higher quality decisions and fully-informed and preference-based consent to health provider actions. The coming paradigm will therefore be characterised by apomediative ('direct-to-consumer') decision support tools, engaged with by the person in the community to help them make health production decisions for themselves (including whether to consult a healthcare professional or provider), as well as intermediative ('direct-from-clinician') tools, delivered by a health professional in a 'shared decision making' or 'co-creation of health' process. This vision paper elaborates on the implementation of these preference-sensitive decision support tools through the technique of Multi-Criteria Decision Analysis.

Cultural changes are needed in medicine if the benefits of technological advances are to benefit healthcare users. The Digital Health Manifesto of 'medical futurist' doctor Bertalan Meskó and 'e-patient' Dave deBronkart, The Patient Will See You Now by Eric Topol and The Patient as CEO by Robin Farmanfarmaian, are among the proliferating warnings of the approaching paradigm shift in medicine, resulting, above all, from technological advances that gives users independent access to exponentially increasing amounts of information about themselves. We question their messages only in suggesting they do not sufficiently shift the focus from 'patient' to 'person' and consequently fail to recognise the need for the credible, efficient, ethical and independent decision support that can ensure the 'democratisation of knowledge' is person empowering, not overpowering. Such decision support can ensure the 'democratisation of decision,' leading to higher quality decisions and fully-informed and preference-based consent to health provider actions. The coming paradigm will therefore be characterised by apomediative ('direct-to-consumer') decision support tools, engaged with by the person in the community to help them make health production decisions for themselves (including whether to consult a healthcare professional or provider), as well as intermediative ('direct-from-clinician') tools, delivered by a health professional in a 'shared decision making' or 'co-creation of health' process. This vision paper elaborates on the implementation of these preference-sensitive decision support tools through the technique of Multi-Criteria Decision Analysis.

The questions 'What constitutes a good health care decision?', and, by extension, 'What constitutes good healthcare decision support?' continue to be asked. The most developed answers focus largely, often exclusively, on the quality of the 'deliberation' component as the determinant of the quality of the decision or decision aid. We argue that these answers and resulting aids reflect the preferences of healthcare professionals and aid developers and that these preferences are closely aligned with their interests. Some interests are material, but many professional, institutional, intellectual, methodological, and ethical. Successful promotion of a particular preference-sensitive, interest-conflicted decision aid does not change its ontological nature. Conflicts of interest are therefore universal and of concern only when this ontology is denied and if aids based on alternative interest-based preferences, such as technologies involving numerical analytic calculation, are subjected to discrimination.

Empirical measures of 'decision aid quality', like normative ones, are of a formative construct and therefore embody interest-conflicted preferences in their criteria selection and weighting. The preferences of the International Patient Decision Aid Standards consortium distinguish the quality of the decision-making process and the quality of the choice that is made '(i.e., decision quality)'. The Decision Conflict Scale features heavily in their profile measure of the former and Decision Quality Instruments (DQIs), have been developed by members of the consortium to measure the latter. We confirm that both of these, and other components, like the higher-level measures, are preference-sensitive and interest-conflicted. Non-financial interest-conflicted preferences are endemic in healthcare research, policy-making, and practice. That they are inevitable means the main problem lies in the denial of this and attitude to and behaviour towards alternatives, equally interest-conflicted.

BACKGROUND: User involvement is appearing increasingly on policy agendas in many countries, with a variety of proposals for facilitating it. The belief is that it will produce better health for individuals and community, as well as demonstrate greater respect for the basic principles of autonomy and democracy. OBJECTIVE: Our Web-based project aims to increase involvement in health care and health research and is presented in the form of an umbrella protocol for a set of project-specific protocols. We conceptualize the person as a researcher engaged in a continual, living, informal "n-of-1"-type study of the effects of different actions and interventions on their health, including those implying contact with health care services. We see their research as primarily carried out in order to make better decisions for themselves, but they can offer to contribute the results to the wider population. We see the efforts of the "person-as-researcher" as contributing to the total amount of research undertaken in the community, with research not being confined to that undertaken by professional researchers and institutions. This view is fundamentally compatible with both the emancipatory and conventional approaches to increased user involvement, though somewhat more aligned with the former. METHODS: Our online decision support tools, delivered directly to the person in the community and openly accessible, are to be seen as research resources. They will take the form of interactive decision aids for a variety of specific health conditions, as well as a generic one that supports all health and health care decisions through its focus on key aspects of decision quality. We present a high-level protocol for the condition-specific studies that will implement our approach, organized within the Populations, Interventions, Comparators, Outcomes, Timings, and Settings (PICOTS) framework. RESULTS: Our underlying hypothesis concerns the person-as-researcher who is equipped with a prescriptive, transparent, expected value-based opinion-an opinion that combines their criterion importance weights with the Best Estimates Available Now for how well each of the available options performs on each of those outcomes. The hypothesis is that this person-as-researcher is more likely to be able to position themselves as an active participant in a clinical encounter, if they wish, than someone who has engaged with a descriptive decision aid that attempts to work with their existing cognitive processes and stresses the importance of information. The precise way this is hypothesis tested will be setting-specific and condition-specific and will be spelled out in the individual project protocols. CONCLUSIONS: Decision resources that provide fast access to the results of slower thinking can provide the stimulus that many individuals need to take a more involved role in their own health. Our project, advanced simply as one approach to increased user involvement, is designed to make progress in the short term with minimal resources and to do so at the point of decision need, when motivation is highest. Some basic distinctions, such as those between science and non-science, research and practice, community and individual, and lay and professional become somewhat blurred and may need to be rethought in light of this approach.