Skip to main content
Hauptrubriken
CME Facharzt-Training Webinare Zeitschriften Bücher e.Medpedia Podcast
Service
Jobbörse Info & Hilfe
Fachgebiete
Anästhesiologie Allgemeinmedizin Arbeitsmedizin Augenheilkunde Chirurgie Dermatologie Gynäkologie und Geburtshilfe HNO Innere Medizin Kardiologie Neurologie Onkologie und Hämatologie Orthopädie und Unfallchirurgie Pädiatrie Pathologie Psychiatrie Radiologie Rechtsmedizin Urologie Zahnmedizin
Themen
Klimawandel und Gesundheit Neues aus dem Markt COVID-19 Praxis und Beruf Seltene Erkrankungen GOÄ & EBM Panorama
Sammlungen
Kasuistiken Algorithmen & Infografiken Blickdiagnosen Arthropedia FlapFinder (für Dermatochirurgen) Videos Kongressberichterstattung Medizin für Apothekerinnen und Apotheker Für Ärztinnen und Ärzte in Weiterbildung Für Medizinstudierende
Erweiterte Suche
Anmelden
nach oben
Health Care Analysis
Erschienen in: Health Care Analysis 3/2017

24.12.2014 | Original Article

The Benefits of Patient Involvement for Translational Research

verfasst von: Lieke van der Scheer, Elisa Garcia, Anna Laura van der Laan, Simone van der Burg, Marianne Boenink

Erschienen in: Health Care Analysis | Ausgabe 3/2017

Einloggen, um Zugang zu erhalten

Abstract

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement (‘translation’) of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration.
Fußnoten
1
We are aware of the fact that most authors describe three rationales for patient involvement: instrumental, substantive, and normative [57] or a variant of this original. These are formal features of a reason. Although we are in accordance with works regarding these differentiations, we believe that, for our purpose, substantive reasons are more useful. The power and knowledge-rationales are substantive reasons for advocating patient involvement.
 
Literatur
1.
Abma, T. A., & Broerse, J. E. W. (2007). Zeggenschap in wetenschap: Patiëntenparticipatie in theorie en praktijk. Den Haag: Boom/Lemma.
2.
3.
Advisory Council on Health Research. (2007). Translational research in the Netherlands. The Hague: Between laboratory and clinical practice.
4.
Alonso-Coello, P., Montori, V. M., Solà, I., Schünemann, H. J., Devereaux, P. J., Charles, C., et al. (2008). Values and preferences in oral anticoagulation in patients with atrial fibrillation, physicians’ and patients’ perspectives: Protocol for a two-phase study. Bmc Health Services Research, 8(1), 221.CrossRefPubMedPubMedCentral
5.
Arnstein, S. (1969). A ladder of citizen participation. Journal of the American Planning Association, 35(4), 216–224.
6.
Biegelbauer, P. (2012). Presentation: Governance structures for translational research. Austria, Finland and Germany. Paper presented at the International Conference on Translational Research in Biomedicine: Challenges and Good Practice, Berlin.
7.
Bijker, W. E. (1995). Of bicycles, bakelites, and bulbs: Toward a theory of sociotechnical change. Cambridge, Mass: MIT Press.
8.
Boote, J., Baird, W., & Beecroft, C. (2010). Public involvement at the design stage of primary health research: A narrative review of case examples. Health policy, 95(1), 10–23.
9.
Boote, J., Barber, R., & Cooper, C. (2006). Principles and indicators of successful consumer involvement in NHS research: Results of a Delphi study and subgroup analysis. Health Policy, 75(3), 280–297.CrossRefPubMed
10.
Boote, J., Telford, R., & Cooper, C. (2002). Consumer involvement in health research: A review and research agenda. Health Policy, 61(2), 213–236.CrossRefPubMed
11.
Broder, S., & Cushing, M. (1993). Trends in program project grant funding at the National Cancer Institute. Cancer Research, 53(3), 477.PubMed
12.
Burke, W., Kuszler, P., Starks, H., Holland, S., & Press, N. (2008). Translational genomics: Seeking a shared vision of benefit. The American Journal of Bioethics, 8(3), 54–56.CrossRefPubMedPubMedCentral
13.
Callard, F., Rose, D., & Wykes, T. (2012). Close to the bench as well as at the bedside: Involving service users in all phases of translational research. Health Expectations, 15(4), 389–400.
14.
Callon, M. (1999). The role of lay people in the production and dissemination of scientific knowledge. Science Technology & Society, 4(81), 81–94.CrossRef
15.
Caron-Flinterman, J. (2005). A new voice in science: Patient participation in decision-making on biomedical research. Amsterdam: VU.
16.
Caron-Flinterman, J. F., Broerse, J. E. W., & Bunders, J. F. G. (2005). The experiential knowledge of patients: A new resource for biomedical research? Social Science and Medicine, 60(11), 2575–2584.CrossRefPubMed
17.
Caron-Flinterman, F. J., Broerse, J. E. W., & Bunders, J. F. G. (2007). Patient partnership in decision-making on biomedical research: Changing the network. Science, Technology and Human Values, 32(3), 339–368.CrossRef
18.
Collins, F. S. (2011). Reengineering translational science: The time is right. Science translational medicine, 3(90), 1–6.
19.
Cornwall, A. (2008). Unpacking ‘Participation’: Models, meanings and practices. Community Development Journal, 43(3), 269–283.CrossRef
20.
Cripe, T. P., Thomson, B., Boat, T. F., & Williams, D. A. (2005). Promoting Translational Research in Academic Health Centers: Navigating the” Roadmap”. Academic Medicine, 80(11), 1012–1018.CrossRefPubMed
21.
de Wit, M., Abma, T., Koelewijn-Van Loon, M., Collins, S., & Kirwan, J. (2013). Facilitating and inhibiting factors for long-term involvement of patients at outcome conferences: Lessons learnt from a decade of collaboration in OMERACT—a qualitative study. BMJ open, 3(8), e003311.CrossRefPubMedPubMedCentral
22.
de Wit, M., Abma, T., Koelewijn-van Loon, M., Collins, S., & Kirwan, J. (2013). Involving patient research partners has a significant impact on outcomes research: A responsive evaluation of the international OMERACT conferences. BMJ open, 3(5), 1–12.
23.
Devereaux, P. J., Anderson, D. R., Gardner, M. J., Putnam, W., Flowerdew, G. J., Brownell, B. F., et al. (2001). Differences between perspectives of physicians and patients on anticoagulation in patients with atrial fibrillation: Observational study. British Medical Journal, 323(7323), 1218–1221.CrossRefPubMedPubMedCentral
24.
Elberse, J. E. (2012). Changing the health research system. Patient participation in health research. Den Bosch: Uitgeverij BOXpress.
25.
Elberse, J. E., Caron-Flinterman, J. F., & Broerse, J. E. W. (2011). Patient–expert partnerships in research: How to stimulate inclusion of patient perspectives. Health Expectations, 14(3), 225–239.CrossRefPubMed
26.
Entwistle, V., Renfrew, M., Yearley, S., Forrester, J., & Lamont, T. (1998). Lay perspectives: Advantages for health research. British Medical Journal, 316(7129), 463–466.CrossRefPubMedPubMedCentral
27.
Epstein, S. (1995). The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Science, Technology and Human Values, 20(4), 408–437.CrossRefPubMed
28.
Fagnan, L. J., Davis, M., Deyo, R. A., Werner, J. J., & Stange, K. C. (2010). Linking practice-based research networks and clinical and translational science awards: New opportunities for community engagement by academic health centers. Academic Medicine, 85(3), 476–483.CrossRefPubMedPubMedCentral
29.
Felt, U., & Fochler, M. (2008). The bottom-up meanings of the concept of public participation in science and technology. Science and Public Policy, 35(7), 489–499.CrossRef
30.
Flinterman, J. F., Teclemariam-Mesbah, R., Broerse, J. E. W., & Bunders, J. R. G. (2001). Transdisciplinarity: The new challenge for biomedical research. Bulletin of Science, Technology & Society, 21(4), 253–266.CrossRef
31.
Geels, F. W., & Smit, W. A. (2000). Failed technology futures: Pitfalls and lessons from a historical survey. Futures, 32(9), 867–885.CrossRef
32.
Grady, P. A. (2010). Translational research and nursing science. Nursing Outlook, 58(3), 164–166.CrossRefPubMed
33.
Guston, D. H., & Sarewitz, D. (2002). Real-time technology assessment. Technology in Society, 24(1), 93–109.CrossRef
34.
Hanley, B., Bradburn, J., Barnes, M., Evans, C., Goodare, H., Kelson, M., et al. (2004). Involving the public in NHS, public health and social care research: Briefing notes for researchers. UK: Eastleigh.
35.
Hewlett, S., Wit, M. D., Richards, P., Quest, E., Hughes, R., Heiberg, T., & Kirwan, J. (2006). Patients and professionals as research partners: Challenges, practicalities, and benefits. Arthritis Care & Research, 55(4), 676–680.CrossRef
36.
Kaltman, J. R., Schramm, C., & Pearson, G. D. (2010). The national heart, lung, and blood institute bench to bassinet program: A new paradigm for translational research. Journal of the American College of Cardiology, 55(12), 1262–1265.CrossRefPubMed
37.
Khoury, M. J., Gwinn, M., Yoon, P. W., Dowling, N., Moore, C. A., & Bradley, L. (2007). The continuum of translation research in genomic medicine: How can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention? Genetics in Medicine, 9(10), 665–674.CrossRefPubMed
38.
Kirwan, J., Heiberg, T., Hewlett, S., Hughes, R., Kvien, T., Ahlmèn, M., et al. (2003). Outcomes from the patient perspective workshop at OMERACT 6. The Journal of Rheumatology, 30(4), 868–872.PubMed
39.
Kirwan, J. R., Hewlett, S. E., Heiberg, T., Hughes, R. A., Carr, M., Hehir, M., et al. (2005). Incorporating the patient perspective into outcome assessment in rheumatoid arthritis. progress at OMERACT 7. The Journal of Rheumatology, 32(11), 2250–2256.PubMed
40.
Laan van der, A. L., & Boenink, M. (2012). Beyond bench and bedside: Disentangling the concept of translational research. Health Care Analysis, 1–18. doi:10.​1007/​s10728-012-0236-x.
41.
Langstrup, H., & Ross Winthereik, B. (2008). The making of self-monitoring asthma patients: Mending a split reality with comparative ethnography. Comparative Sociology, 7(3), 362–386.CrossRef
42.
Maienschein, J., Sunderland, M., Ankeny, R. A., & Robert, J. S. (2008). The ethos and ethics of translational research. The American Journal of Bioethics, 8(3), 43–51.CrossRefPubMed
43.
44.
Mojica, W. D., Arshad, A., Sharma, S., & Brooks, S. P. (2006). Manual exfoliation plus immunomagnetic bead separation as an initial step toward translational research. Archives of Pathology and Laboratory Medicine, 130(1), 74–79.PubMed
45.
Nierse, C. J., Schipper, K., van Zadelhoff, E., van de Griendt, J., & Abma, T. A. (2012). Collaboration and co-ownership in research: Dynamics and dialogues between patient research partners and professional researchers in a research team. Health Expectations, 15(3), 242–254.CrossRefPubMed
46.
Nowotny, H. (2003). Democratising expertise and socially robust knowledge. Science and Public Policy, 30(3), 151–156.CrossRef
47.
Pols, J. (2012). Care at a distance: On the closeness of technology. Amsterdam: Amsterdam University Press.
48.
Pols, J. (2014). Knowing patients turning patient knowledge into science. Science, Technology and Human Values, 39(1), 73–97.CrossRef
49.
Prainsack, B. (2012). Citizen science in the health domain. Encyclopedia of creativity, invention, and entrepeneurship.
50.
Pretty, J. N. (1995). Participatory learning for sustainable agriculture. World Development, 23(8), 1247–1263.CrossRef
51.
Rip, A., & Kemp, R. (1998). Technological Change. In S. A. E. M. E. Rayner (Ed.), Human Choices and Climate Change (Vol. 2, pp. 327–399). Columbus, Ohio: Battelle.
52.
Rip, A., Misa, T. J., & Schot, J. (1995). &, J. Pinter Publishers: Managing technology in society.
53.
Roman, J. (2009). Creating a culture of discovery through clinical trials and translational research. The American journal of the medical sciences, 337(3), 155.CrossRefPubMed
54.
Rose, D., & Blume, S. (2003). Citizens as users of technology: An exploratory study of vaccines and vaccination. In N. A. T. P. Oudshoorn (Ed.), How Users Matter. The Co-construction of Users and Technology (pp. 103–132). Cambridge, Mass: MIT.
55.
Salomon, J.-J. (2000). Science, technology and democracy. Minerva, 38, 33–51.CrossRef
56.
57.
Stirling, A. (2008). “Opening Up” and “Closing Down” power, participation, and pluralism in the social appraisal of technology. Science, Technology and Human Values, 33(2), 262–294.CrossRef
58.
Stokes, D. E. (1997). Pasteur’s quadrant: Basic science and technological innovation. Washington: Brookings Institution Press.
59.
Sung, N. S., Crowley, W. F., Genel, M., Salber, P., Sandy, L., Sherwood, L. M., & Getz, K. (2003). Central challenges facing the national clinical research enterprise. JAMA, 289(10), 1278–1287.CrossRefPubMed
60.
Tallon, D., Chard, J., & Dieppe, P. (2000). Relation between agendas of the research community and the research consumer. Lancet, 355(9220), 2037–2040.CrossRefPubMed
61.
Teunissen, G. J., & Abma, T. A. (2012). Patients at the negotiating table: Exploring appraisal criteria of health research and quality of care used by patient advocacy groups in The Netherlands. European Journal for Person Centered Healthcare, 1(1), 232–239.CrossRef
62.
Trappenburg, M. (2008). Genoeg is genoeg: Over gezondheidszorg en democratie. Amsterdam: Amsterdam University Press.CrossRef
63.
Tritter, J. Q., & McCallum, A. (2006). The snakes and ladders of user involvement: Moving beyond Arnstein. Health Policy, 76(2), 156–168.CrossRefPubMed
64.
van de Bovenkamp, H. M., & Trappenburg, M. J. (2009). Reconsidering patient participation in guideline development. Health Care Analysis, 17(3), 198–216.CrossRefPubMed
65.
Verhoeff, R. P., & Waarlo, A. J. (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.CrossRef
66.
Vignola-Gagné, E., & Biegelbauer, P. S. (2013). Translational research encyclopedia of creativity (pp. 1834–1843). Berlin: Invention, Innovation and Entrepreneurship, Springer.
67.
Vossen, C. (2006). & Smit, C. ZonMw: Handboek patiëntenparticipatie in wetenschappelijk onderzoek.
68.
Welfare, M. R., Colligan, J., Molyneux, S., Pearson, P., & Barton, J. R. (2006). The identification of topics for research that are important to people with ulcerative colitis. European Journal of Gastroenterology and Hepatology, 18(9), 939–944.CrossRefPubMed
69.
Woolf, S. H. (2008). The meaning of translational research and why it matters. JAMA, 299(2), 211–213.CrossRefPubMed
70.
71.
Zerhouni, E. A. (2005). Translational and clinical science: Time for a new vision. New England Journal of Medicine, 353(15), 1621–1623.CrossRefPubMed
72.
Zerhouni, E. (2007). Translational research: Moving discovery to practice. Clinical Pharmacology and Therapeutics, 81(1), 126–128.CrossRefPubMed
Metadaten
Titel
The Benefits of Patient Involvement for Translational Research
verfasst von
Lieke van der Scheer
Elisa Garcia
Anna Laura van der Laan
Simone van der Burg
Marianne Boenink
Publikationsdatum
24.12.2014
Verlag
Springer US
Erschienen in
Health Care Analysis / Ausgabe 3/2017
Print ISSN: 1065-3058
Elektronische ISSN: 1573-3394
DOI
https://doi.org/10.1007/s10728-014-0289-0

Weitere Artikel der Ausgabe 3/2017

Health Care Analysis 3/2017 Zur Ausgabe

Original Article

Emerging Technologies in the Treatment of Anorexia Nervosa and Ethics: Sufferers’ Accounts of Treatment Strategies and Authenticity

Original Article

The Principle-Based Method of Practical Ethics

OriginalPaper

Trust and Its Role in the Medical Encounter

OriginalPaper

Critical Realism and Empirical Bioethics: A Methodological Exposition

OriginalPaper

Making Markets in Long-Term Care: Or How a Market Can Work by Being Invisible