Subtle voices, distant futures: a critical look at conditions for patient involvement in Alzheimer’s biomarker research and beyond

References

• Abma, T. , J. Nierse , and G. Widdershoven . 2009. “Patients as Partners in Responsive Research: Methodological Notions for Collaborations in Mixed Research Teams.” Qualitative Health Research 19 (3): 401–415.
   PubMed Web of Science ®Google Scholar
• Adam, B. , and C. Groves . 2007. Future Matters: Action, Knowledge, Ethics . Leiden : Brill.
   Google Scholar
• Akrich, M. , O. O’Donovan , and V. Rabeharisoa . 2015. “The Entanglement of Scientific and Political Claims: Towards a New Form of Patients’ Activism.” In The Public Shaping of Medical Research , edited by P. Wehling , W. Viehöver , and S. Koenen , 72–88. London : Routledge.
   Google Scholar
• Alzheimer's Society . 2002. Research Newsletter: Quality Research in Dementia Newsletter of the Alzheimer’s Society . London : Alzheimer’s Society.
   Google Scholar
• Alzheimer's Society . 2004. Briefing on the New Patient Involvement Structures That Have Replaced Community Health Councils. For Branches and Supporters of the Alzheimer’s Society . London : Alzheimer’s Society.
   Google Scholar
• Aschenbrenner, A. , B. Gordon , T. Benzinger , J. Morris , and J. Hassenstab . 2018. “Influence of Tau PET, Amyloid PET, and Hippocampal Volume on Cognition in Alzheimer Disease.” Neurology 91 (9): e859–e866.
   PubMed Web of Science ®Google Scholar
• Benschop, R. , K. Horstman , and R. Vos . 2003. “Voice Beyond Choice: Hesitant Voice in Public Debates About Genetics in Health Care.” Health Care Analysis 11 (2): 141–150.
   PubMed Web of Science ®Google Scholar
• Beuscher, L. , and V. Grando . 2009. “Challenges in Conducting Qualitative Research with Individuals with Dementia.” Research in Gerontological Nursing 2 (1): 6–11.
   PubMed Web of Science ®Google Scholar
• Blok, V. 2014. “Look Who’s Talking: Responsible Innovation, the Paradox of Dialogue and the Voice of the Other in Communication and Negotiation Processes.” Journal of Responsible Innovation 1 (2): 171–190.
   Google Scholar
• Boenink, M. , H. van Lente , and E. Moors , eds. 2016. Emerging Technologies for Diagnosing Alzheimer's Disease: Innovating with Care , 1–17. London : Palgrave Macmillan.
   Google Scholar
• Boenink, M. , L. van der Scheer , E. Garcia , and S. van der Burg . 2018. “Giving Voice to Patients: Developing a Discussion Method to Involve Patients in Translational Research.” NanoEthics 12 (3): 181–197.
   PubMed Web of Science ®Google Scholar
• Bogner, A. 2012. “The Paradox of Participation Experiments.” Science, Technology, & Human Values 37 (5): 506–527.
   Web of Science ®Google Scholar
• Boote, J. , R. Wong , and A. Booth . 2015. “‘Talking the Talk or Walking the Walk?’ A Bibliometric Review of the Literature on Public Involvement in Health Research Published Between 1995 and 2009.” Health Expectations 18 (1): 44–57.
   PubMed Web of Science ®Google Scholar
• Brown, N. , and M. Michael . 2003. “A Sociology of Expectations: Retrospecting Prospects and Prospecting Retrospects.” Technology Analysis & Strategic Management 15 (1): 3–18.
   Web of Science ®Google Scholar
• Buck, D. , C. Gamble , L. Dudley , J. Preston , B. Hanley , P. Williamson , B. Young , and EPIC Patient Advisory Group . 2014. “From Plans to Actions in Patient and Public Involvement: Qualitative Study of Documented Plans and the Accounts of Researchers and Patients Sampled From a Cohort of Clinical Trials.” BMJ Open 4 (12): e006400.
   PubMed Web of Science ®Google Scholar
• Callon, M. , and V. Rabeharisoa . 2008. “The Growing Engagement of Emergent Concerned Groups in Political and Economic Life.” Science, Technology, & Human Values 33 (2): 230–261.
   Web of Science ®Google Scholar
• Caron-Flinterman, J. 2005. “A New Voice in Science: Patient Participation in Decision-making on Biomedical Research”. PhD diss., VU Amsterdam.
   Google Scholar
• Chalmers, D. , R. McWhirter , D. Nicol , T. Whitton , M. Otlowski , M. Burgess , S. Foote , C. Critchley , and J. Dickinson . 2014. “New Avenues Within Community Engagement: Addressing the Ingenuity Gap in our Approach to Health Research and Future Provision of Health Care.” Journal of Responsible Innovation 1 (3): 321–328.
   Google Scholar
• Chilvers, J. , and M. Kearnes , eds. 2016. Remaking Participation: Science, Environment and Emergent Publics . New York : Routledge.
   Google Scholar
• Cridland, E. K. , L. Phillipson , C. Brennan-Horley , and K. Swaffer . 2016. “Reflections and Recommendations for Conducting In-depth Interviews With People With Dementia.” Qualitative Health Research 26 (13): 1774–1786.
   PubMed Web of Science ®Google Scholar
• Crocker, J. , A. Boylan , J. Bostock , and L. Locock . 2017. “Is It Worth It? Patient and Public Views on the Impact of Their Involvement in Health Research and its Assessment: A UK-Based Qualitative Interview Study.” Health Expectations 20 (3): 519–528.
   PubMed Web of Science ®Google Scholar
• Cuijpers, Y. 2016. “Dikes and Dementia: How Multiple Framings of Dementia Coexist During the Development of a National Dementia Strategy.” In Emerging Technologies for Diagnosing Alzheimer's Disease: Innovating with Care , edited by M. Boenink , H. van Lente , and E. Moors , 185–204. London : Palgrave Macmillan.
   Google Scholar
• Cuijpers, Y. , and H. van Lente . 2015. “Early Diagnostics and Alzheimer’s Disease: Beyond ‘Cure’ and ‘Care’.” Technological Forecasting and Social Change 93: 54–67.
   Web of Science ®Google Scholar
• Davies, S. 2016. “Participation as Pleasure. Citizenship and Science Communication.” In Remaking Participation: Science, Environment and Emergent Publics , edited by J. Chilvers and M. Kearnes , 162–177. New York : Routledge.
   Google Scholar
• Delgado, A. , K. Kjølberg , and F. Wickson . 2011. “Public Engagement Coming of Age: From Theory to Practice in STS Encounters with Nanotechnology.” Public Understanding of Science 20 (6): 826–845.
   Web of Science ®Google Scholar
• Demers-Payette, O. , P. Lehoux , and G. Daudelin . 2016. “Responsible Research and Innovation: A Productive Model for the Future of Medical Innovation.” Journal of Responsible Innovation 3 (3): 188–208.
   Web of Science ®Google Scholar
• Dermody, N. , M. Hornberger , O. Piguet , J. Hodges , and M. Irish . 2016. “Prospective Memory Impairments in Alzheimer's Disease and Behavioral Variant Front temporal Dementia: Clinical and Neural Correlates.” Journal of Alzheimer's Disease 50 (2): 425–441.
   PubMed Web of Science ®Google Scholar
• Domecq, J. , G. Prutsky , T. Elraiyah , Z. Wang , M. Nabhan , N. Shippee , J. Brito , et al. 2014. “Patient Engagement in Research: A Systematic Review.” BMC Health Services Research 14 (1): 89.
   PubMed Web of Science ®Google Scholar
• Dudley, L. , C. Gamble , J. Preston , D. Buck , B. Hanley , P. Williamson , B. Young , and The EPIC Patient Advisory Group . 2015. “What Difference Does Patient and Public Involvement Make and What are its Pathways to Impact? Qualitative Study of Patients and Researchers from a Cohort of Randomised Clinical Trials.” PLoS ONE 10 (6): e0128817.
   PubMed Web of Science ®Google Scholar
• Elberse, J. 2012. “Changing the Health Research System. Patient Participation in Health Research”. PhD diss., VU Amsterdam.
   Google Scholar
• Epstein, S. 1996. Impure Science: AIDS, Activism, and the Politics of Knowledge . Berkeley : University of California Press.
   Google Scholar
• Esmail, L. , E. Moore , and A. Rein . 2015. “Evaluating Patient and Stakeholder Engagement in Research: Moving from Theory to Practice.” Journal of Comparative Effectiveness Research 4 (2): 133–145.
   PubMedGoogle Scholar
• Felt, U. 2016. “The Temporal Choreographies of Participation: Thinking Innovation and Society from a Time-sensitive Perspective.” In Remaking Participation: Science, Environment and Emergent Publics , edited by J. Chilvers and M. Kearnes , 178–198. New York : Routledge.
   Google Scholar
• Felt, U. 2017. “‘Response-able Practices’ or ‘New Bureaucracies of Virtue’: The Challenges of Making RRI Work in Academic Environments.” In Responsible Innovation 3 , edited by L. Asveld L , R. van Dam-Mieras , T. Swierstra , S. Lavrijssen , K. Linse , and J. van den Hoven , 49–68. Cham : Springer.
   Google Scholar
• Felt, U. , M. Fochler , A. Muller , and M. Strassnig . 2008. “Unruly Ethics: On the Difficulties of a Bottom-up Approach to Ethics in the Field of Genomics.” Public Understanding of Science 18 (3): 354–371.
   Web of Science ®Google Scholar
• Felt, U. , S. Schumann , C. Schwarz , and M. Strassnig . 2014. “Technology of Imagination: A Card-based Public Engagement Method for Debating Emerging Technologies.” Qualitative Research 14 (2): 233–251.
   Web of Science ®Google Scholar
• Fleurence, R. , J. Selby , K. Odom-Walker , G. Hunt , D. Meltzer , J. Slutsky , and C. Yancy . 2013. “How the Patient-centered Outcomes Research Institute is Engaging Patients and Others in Shaping its Research Agenda.” Health Affairs 32 (2): 393–400.
   PubMed Web of Science ®Google Scholar
• G8 . 2013. G8 Dementia Summit Declaration. Policy paper RDD/10495.
   Google Scholar
• Gudowsky, N. , W. Peissl , M. Sotoudeh , and U. Bechtold . 2012. “Forward-looking Activities: Incorporating Citizens’ Visions.” Poiesis & Praxis 9 (1–2): 101–123.
   PubMedGoogle Scholar
• Guston, D. 2015. “People, Persons and Publics.” Journal of Responsible Innovation 2 (3): 243–245.
   Web of Science ®Google Scholar
• Halse, J. , E. Brandt , B. Clark , and T. Binder . 2010. Rehearsing the Future . Copenhagen : The Danish Design School Press.
   Google Scholar
• Irwin, A. , T. Jensen , and K. Jones . 2012. “The Good, the Bad and the Perfect: Criticizing Engagement Practice.” Social Studies of Science 43 (1): 118–135.
   Web of Science ®Google Scholar
• Ives, J. , S. Damery , and S. Redwod . 2013. “PPI, Paradoxes and Plato: Who's Sailing the Ship?” Journal of Medical Ethics 39 (3): 181–185.
   PubMed Web of Science ®Google Scholar
• Jack, C. , M. Albert , D. Knopman , G. McKhann , R. Sperling , M. Carrillo , B. Thies , and C. Phelps . 2011. “Introduction to the Recommendations From the National Institute on Aging-Alzheimer's Association Workgroups on Diagnostic Guidelines for Alzheimer's Disease.” Alzheimer's & Dementia 7 (3): 257–262.
   PubMed Web of Science ®Google Scholar
• Jack, C. , D. Bennett , K. Blennow , M. Carrillo , B. Dunn , S. Haeberlein , D. Hotlzman , et al. 2018. “NIA-AA Research Framework: Toward a Biological Definition of Alzheimer's Disease.” Alzheimer's & Dementia 14 (4): 535–562.
   PubMed Web of Science ®Google Scholar
• Joss, S. , and S. Bellucci , eds. 2002. Participatory Technology Assessment: European Perspectives . London : University of Westminster.
   Google Scholar
• Kent, A. 2002. “Patients + Research = Result! The Role of Patients and Their Interest Groups in Biomedical Research.” EMBO Reports 3 (8): 707–708.
   PubMed Web of Science ®Google Scholar
• Keulartz, J. , M. Korthals , M. Schermer , and T. Swierstra . 2002. Pragmatist Ethics for a Technological Culture . Dordrecht : Kluwer Academic Publishers.
   Google Scholar
• Kiran, A. , N. Oudshoorn , and P.-P. Verbeek . 2015. “Beyond Checklists: Toward an Ethical-constructive Technology Assessment.” Journal of Responsible Innovation 2 (1): 5–19.
   Web of Science ®Google Scholar
• Krzywoszynska, A. , W. Matt , A. Buckley , P. Chiles , N. Gregson , H. Holmes , and J. Mawyin . 2018. “Opening Up the Participation Laboratory: The Cocreation of Publics and Futures in Upstream Participation.” Science, Technology, & Human Values 43 (5): 785–809.
   Web of Science ®Google Scholar
• Lehoux, P. , B. Poland , and G. Daudelin . 2006. “Focus Group Research and ‘the Patient's View’.” Social Science & Medicine 63 (8): 2091–2104.
   PubMed Web of Science ®Google Scholar
• Long, T. , and V. Blok . 2017. “When the Going Gets Tough, the Tough Get Going: Towards a New–More Critical–Engagement with Responsible Research and Innovation in an Age of Trump, Brexit, and Wider Populism.” Journal of Responsible Innovation 4 (1): 64–70.
   Web of Science ®Google Scholar
• Lucivero, F. , T. Swierstra , and M. Boenink . 2011. “Assessing Expectations: Towards a Toolbox for an Ethics of Emerging Technologies.” NanoEthics 5 (2): 129–141.
   PubMedGoogle Scholar
• Marres, N. 2012. Material Participation: Technology, the Environment and Everyday Publics . Basingstoke : Palgrave Macmillan.
   Google Scholar
• Martin, G. 2008. “‘Ordinary People Only’: Knowledge, Representativeness, and the Publics of Public Participation in Healthcare.” Sociology of Health & Illness 30 (1): 35–54.
   PubMed Web of Science ®Google Scholar
• Miller, F. , S. Patton , A. Nam , J. Bielecki , and M. Krahn . 2016. “Addressing Patient Needs and Public Commitments in Health Technology Innovation: A Review of Patient and Public Engagement in Technology Development and Assessment.” Available at SSRN: https://ssrn.com/abstract=3079529 .
   Google Scholar
• Moore, T. F. , and J. Hollett . 2003. “Giving Voice to Persons Living with Dementia: the Researcher’s Opportunities and Challenges.” Nursing Science Quarterly 16 (2): 163–167.
   PubMed Web of Science ®Google Scholar
• New Economics Foundation . 2003. So You’re Using a Card Game to Make Policy Recommendations? Unpublished Report on the Evolution of Democs . London : New Economics Foundation.
   Google Scholar
• Nielsen, K. , and H. Langstrup . 2018. “Tactics of Material Participation: How Patients Shape Their Engagement Through E-health.” Social Studies of Science 48 (2): 259–282.
   PubMed Web of Science ®Google Scholar
• Nierse, C. , and T. Abma . 2011. “Developing Voice and Empowerment: The First Step Towards a Broad Consultation in Research Agenda Setting.” Journal of Intellectual Disability Research 55 (4): 411–421.
   PubMedGoogle Scholar
• Nordmann, A. 2014. “Responsible Innovation, the Art and Craft of Anticipation.” Journal of Responsible Innovation 1 (1): 87–98.
   Google Scholar
• Okamura, N. , R. Harada , A. Ishiki , A. Kikuchi , T. Nakamura , and Y. Kudo . 2018. “The Development and Validation of Tau PET Tracers: Current Status and Future Directions.” Clinical and Translational Imaging 6 (4): 305–316.
   PubMed Web of Science ®Google Scholar
• Pickett, J. , and M. Murray . 2018. “Editorial: Patient and Public Involvement in Dementia Research: Setting New Standards.” Dementia 17 (8): 939–943.
   PubMedGoogle Scholar
• Pittens, C. , J. Elberse , M. Visse , T. Abma , and J. Broerse . 2014. “Research Agendas Involving Patients: Factors That Facilitate or Impede Translation of Patients’ Perspectives in Programming and Implementation.” Science and Public Policy 41 (6): 809–820.
   Web of Science ®Google Scholar
• Pols, J. 2014a. “Knowing Patients: Turning Patient Knowledge Into Science.” Science, Technology, & Human Values 39 (1): 73–97.
   Web of Science ®Google Scholar
• Pols, J. 2014b. “Towards an Empirical Ethics in Care: Relations with Technologies in Health Care.” Medicine, Health Care and Philosophy 18 (1): 81–90.
   Web of Science ®Google Scholar
• Prainsack, B. 2011. “Voting with Their Mice: Personal Genome Testing and the ‘Participatory Turn’ in Disease Research.” Accountability in Research 18 (3): 132–147.
   PubMed Web of Science ®Google Scholar
• Rip, A. , and H. te Kulve . 2008. “Constructive Technology Assessment and Socio-technical Scenarios.” In Presenting Futures , edited by E. Fisher , C. Selin , and J. Wetmore , 49–70. Berlin : Springer.
   Google Scholar
• Rose, D. 2014. “Patient and Public Involvement in Health Research: Ethical Imperative and/or Radical Challenge?” Journal of Health Psychology 19 (1): 149–158.
   PubMed Web of Science ®Google Scholar
• Schicktanz, S. , M. Schweda , and B. Wynne . 2012. “The Ethics of ‘Public Understanding of Ethics’: Why and How Bioethics Expertise Should Include Public and Patients’ Voices.” Medicine, Health Care and Philosophy 15 (2): 129–139.
   PubMed Web of Science ®Google Scholar
• Selin, C. , K. Rawlings , K. de Ridder-Vignone , J. Sadowski , C. Altamirano Allende , G. Gano , S. Davies , and D. Guston . 2017. “Experiments in Engagement: Designing Public Engagement with Science and Technology for Capacity Building.” Public Understanding of Science 26 (6): 634–649.
   PubMed Web of Science ®Google Scholar
• Selin, C. , and J. Sadowski . 2016. “Against Blank Slate Futuring: Noticing Obduracy in the City Through Experiential Methods of Public Engagement.” In Remaking Participation: Science, Environment and Emergent Publics , edited by J. Chilvers , and M. Kearnes , 218–237. New York : Routledge.
   Google Scholar
• Snape, D. , J. Kirkham , J. Preston , J. Popay , N. Britten , M. Collins , K. Froggatt , et al. 2014. “Exploring Areas of Consensus and Conflict Around Values Underpinning Public Involvement in Health and Social Care Research: A Modified Delphi Study.” BMJ Open 4 (1): e004217.
   PubMed Web of Science ®Google Scholar
• Stilgoe, J. , R. Owen , and P. Macnaghten . 2013. “Developing a Framework for Responsible Innovation.” Research Policy 42 (9): 1568–1580.
   Web of Science ®Google Scholar
• Stirling, A. 2008. “‘Opening Up’ and ‘Closing Down’: Power, Participation, and Pluralism in the Social Appraisal of Technology.” Science, Technology, & Human Values 33 (2): 262–294.
   Web of Science ®Google Scholar
• Sun, B. , W. Li , C. Zhu , W. Jin , F. Zeng , Y. Liu , X. Bu , J. Zhu , X. Yao , and Y. Wang . 2018. “Clinical Research on Alzheimer’s Disease: Progress and Perspectives.” Neuroscience Bulletin 34 (6): 1111–1118.
   PubMed Web of Science ®Google Scholar
• Swierstra, T. , M. Boenink , and D. Stemerding . 2009. “Exploring Techno-Moral Change: The Case of the Obesity Pill.” In Evaluating New Technologies. Methodological Problems for the Ethical Assessment of Technology Developments , edited by P. Sollie and M. Duwell , 119–138. Dordrecht : Springer.
   Google Scholar
• van der Scheer, L. , E. Garcia , A. van der Laan , S. van der Burg , and M. Boenink . 2017. “The Benefits of Patient Involvement for Translational Research.” Health Care Analysis 25 (3): 225–241.
   PubMed Web of Science ®Google Scholar
• Verhoeff, R. , and A. Waarlo . 2013. “Good Intentions, Stubborn Practice: A Critical Appraisal of a Public Event on Cancer Genomics.” International Journal of Science Education, Part B 3 (1): 1–24.
   Google Scholar
• Villemagne, V. , M. Fodero-Tavoletti , C. Masters , and C. Rowe . 2015. “Tau Imaging: Early Progress and Future Directions.” The Lancet Neurology 14 (1): 114–124.
   PubMed Web of Science ®Google Scholar
• Wehling, P. 2012. “From Invited to Uninvited Participation (and Back?): Rethinking Civil Society Engagement in Technology Assessment and Development.” Poiesis & Praxis 9 (1–2): 43–60.
   PubMedGoogle Scholar
• World Health Organization and Alzheimer’s Disease International . 2012. Dementia: A Public Health Priority . Geneva : WHO Press.
   Google Scholar
• Wynne, B. 2007. “Public Participation in Science and Technology: Performing and Obscuring a Political–Conceptual Category Mistake.” East Asian Science, Technology and Society 1 (1): 99–110.
   Google Scholar
• ZonMW . 2013. ‘Memorabel’ Programmatekst voor de 1e Fase van een Achtjarig Onderzoeks- en Innovatieprogramma Dementie. Onderdeel van het Deltaplan Dementie , augustus 2013. Den Haag : ZonMW.
   Google Scholar