Skip to main content

Advertisement

SpringerLink
Log in

The Benefits of Patient Involvement for Translational Research

  • Original Article
  • Published:
Health Care Analysis Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  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.

References

  1. Abma, T. A., & Broerse, J. E. W. (2007). Zeggenschap in wetenschap: Patiëntenparticipatie in theorie en praktijk. Den Haag: Boom/Lemma.

    Google Scholar 

  2. Abma, T. A., & Broerse, J. E. (2010). Patient participation as dialogue: Setting research agendas. Health Expectations, 13(2), 160–173.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Advisory Council on Health Research. (2007). Translational research in the Netherlands. The Hague: Between laboratory and clinical practice.

    Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Arnstein, S. (1969). A ladder of citizen participation. Journal of the American Planning Association, 35(4), 216–224.

    Google Scholar 

  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.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  10. Boote, J., Telford, R., & Cooper, C. (2002). Consumer involvement in health research: A review and research agenda. Health Policy, 61(2), 213–236.

    Article  PubMed  Google Scholar 

  11. Broder, S., & Cushing, M. (1993). Trends in program project grant funding at the National Cancer Institute. Cancer Research, 53(3), 477.

    CAS  PubMed  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  Google Scholar 

  15. Caron-Flinterman, J. (2005). A new voice in science: Patient participation in decision-making on biomedical research. Amsterdam: VU.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  24. Elberse, J. E. (2012). Changing the health research system. Patient participation in health research. Den Bosch: Uitgeverij BOXpress.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  PubMed Central  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  Google Scholar 

  31. Geels, F. W., & Smit, W. A. (2000). Failed technology futures: Pitfalls and lessons from a historical survey. Futures, 32(9), 867–885.

    Article  Google Scholar 

  32. Grady, P. A. (2010). Translational research and nursing science. Nursing Outlook, 58(3), 164–166.

    Article  PubMed  Google Scholar 

  33. Guston, D. H., & Sarewitz, D. (2002). Real-time technology assessment. Technology in Society, 24(1), 93–109.

    Article  Google Scholar 

  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.

    Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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  Google Scholar 

  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  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  43. Medical Research Council. (2008). Translational research strategy: A summary Retrieved August 2013, from http://www.mrc.ac.uk/consumption/groups/public/documents/content/mrc004551.pdf

  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.

    CAS  PubMed  Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  46. Nowotny, H. (2003). Democratising expertise and socially robust knowledge. Science and Public Policy, 30(3), 151–156.

    Article  Google Scholar 

  47. Pols, J. (2012). Care at a distance: On the closeness of technology. Amsterdam: Amsterdam University Press.

    Google Scholar 

  48. Pols, J. (2014). Knowing patients turning patient knowledge into science. Science, Technology and Human Values, 39(1), 73–97.

    Article  Google Scholar 

  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.

    Article  Google Scholar 

  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.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  56. Schomberg, V. (2011). What is responsible innovation? Why we need it and how to do it. http://ec.europa.eu/bepa/european-group-ethics/docs/activities/schomberg.pdf

  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.

    Article  Google Scholar 

  58. Stokes, D. E. (1997). Pasteur’s quadrant: Basic science and technological innovation. Washington: Brookings Institution Press.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  60. Tallon, D., Chard, J., & Dieppe, P. (2000). Relation between agendas of the research community and the research consumer. Lancet, 355(9220), 2037–2040.

    Article  CAS  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  62. Trappenburg, M. (2008). Genoeg is genoeg: Over gezondheidszorg en democratie. Amsterdam: Amsterdam University Press.

    Book  Google Scholar 

  63. Tritter, J. Q., & McCallum, A. (2006). The snakes and ladders of user involvement: Moving beyond Arnstein. Health Policy, 76(2), 156–168.

    Article  PubMed  Google Scholar 

  64. van de Bovenkamp, H. M., & Trappenburg, M. J. (2009). Reconsidering patient participation in guideline development. Health Care Analysis, 17(3), 198–216.

    Article  PubMed  Google Scholar 

  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.

    Article  Google Scholar 

  66. Vignola-Gagné, E., & Biegelbauer, P. S. (2013). Translational research encyclopedia of creativity (pp. 1834–1843). Berlin: Invention, Innovation and Entrepreneurship, Springer.

    Google Scholar 

  67. Vossen, C. (2006). & Smit, C. ZonMw: Handboek patiëntenparticipatie in wetenschappelijk onderzoek.

    Google Scholar 

  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.

    Article  PubMed  Google Scholar 

  69. Woolf, S. H. (2008). The meaning of translational research and why it matters. JAMA, 299(2), 211–213.

    Article  CAS  PubMed  Google Scholar 

  70. Zerhouni, E. (2003). The NIH roadmap. Science, 302(5642), 63–72.

    Article  CAS  PubMed  Google Scholar 

  71. Zerhouni, E. A. (2005). Translational and clinical science: Time for a new vision. New England Journal of Medicine, 353(15), 1621–1623.

    Article  CAS  PubMed  Google Scholar 

  72. Zerhouni, E. (2007). Translational research: Moving discovery to practice. Clinical Pharmacology and Therapeutics, 81(1), 126–128.

    Article  CAS  PubMed  Google Scholar 

Download references

Acknowledgment

The authors acknowledge the thoughtful comments of anonymous reviewers.

Funding

The authors are based at the University of Twente (LvdS, ALvdL and MB), and at the Radboudumc (EG, SvdB). This article is the result of a research project of the Centre for Society and the Life Sciences (CSG) in The Netherlands, funded by the Netherlands Genomics Initiative (NGI) and the Center for Translational Molecular Medicine (CTMM).

Author information

Authors and Affiliations

  1. Department of Philosophy, Faculty of Behavioural, Management & Social Sciences, University of Twente, Enschede, The Netherlands

    Lieke van der Scheer, Anna Laura van der Laan & Marianne Boenink

  2. Radboud University Medical Center, Radboud Institute for Health Sciences, IQ Healthcare, Nijmegen, The Netherlands

    Elisa Garcia & Simone van der Burg

Authors
  1. Lieke van der Scheer
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Elisa Garcia
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Anna Laura van der Laan
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Simone van der Burg
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Marianne Boenink
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Lieke van der Scheer.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

van der Scheer, L., Garcia, E., van der Laan, A.L. et al. The Benefits of Patient Involvement for Translational Research. Health Care Anal 25, 225–241 (2017). https://doi.org/10.1007/s10728-014-0289-0

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10728-014-0289-0

Keywords

Search

Navigation