Skip to main content
SpringerLink
Log in

Voorwaarden voor succesvolle betrokkenheid van patiënten/cliënten bij medisch wetenschappelijk onderzoek

  • Wetenschappelijke artikelen
  • Published:
Tijdschrift voor gezondheidswetenschappen Aims and scope

Samenvatting

Nederland is een van de koplopers op het gebied van patiëntenparticipatie in wetenschappelijk onderzoek. Dit heeft geresulteerd in een groot aantal studies naar randvoorwaarden en instrumenten voor betekenisvolle participatie. Bij zowel patiëntenorganisaties als onderzoeksinstellingen en gezondheidsfondsen bestaat nu de behoefte om die kennis bruikbaar te maken voor de praktijk. Daartoe heeft PGOsupport, een netwerkorganisatie voor de versterking en ondersteuning van patiënten- en cliëntenorganisaties, het initiatief genomen om middels een consensusproces praktische aanbevelingen voor participatief onderzoek te ontwikkelen. Het proces bestond uit een drietal gestructureerde bijeenkomsten, ondersteund door een literatuurverkenning, survey en Delphi-methode. Er is consensus bereikt over een set van negen aanbevelingen. Deze geven patiëntvertegenwoordigers en onderzoekers sturing bij de besluitvorming over de wenselijkheid van participatie, de meest geschikte vorm, de kosten en de wijze van evaluatie en rapportage. Daarnaast besteden de aanbevelingen aandacht aan de werving, selectie, ondersteuning, scholing en waardering van patiëntvertegenwoordigers.

Abstract

Requirements for successful patient participation in scientific research

The Netherlands is one of the front runners in promoting patient participation in scientific research. This has resulted in several studies focusing on the facilitators, barriers and instruments for meaningful involvement of patients. Patient organisations, as well as researchers and health research funders feel the urge to translate this knowledge into recommendations for daily use. Therefore, PGOsupport, a Dutch networking organisation that facilitates patient support groups to share information and expertise, initiated the development of practical recommendations for participatory research based on consensus. This process contained a series of three structured meetings, supported by a literature scan, an electronic survey and a Delphi-method. Consensus was achieved on a set of nine recommendations. These recommendations will provide guidance to patient representatives and researchers in the decision making process on the need for patient involvement, its most appropriate form and necessary budget and the way the involvement should be evaluated and reported. They also deal with the recruitment, selection, support, education and acknowledgement of patient representatives. Keywords: patient participation, guidelines, scientific research, patient organisations, patient and public involvement

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

Figuur 1
Figuur 2
Figuur 3

Literatuur

  1. Vossen C, Smit C, Wit M de. Handboek Patiëntenparticipatie in wetenschappelijk onderzoek. Den Haag: VSOP, Reumapatiëntenbond en ZonMw, 2006.

    Google Scholar 

  2. Vossen C. Een 10 voor patiëntenparticipatie. Den Haag: ZonMW, 2013.

    Google Scholar 

  3. Vossen C. Gespreksstof. Tips om doelgroepen een stem te geven binnen projecten. Den Haag: ZonMW, 2010.

    Google Scholar 

  4. Caron-Flinterman JF. A new voice in science – Patient participation in decision-making on biomedical research [dissertation]. Amsterdam: VU University, 2005.

    Google Scholar 

  5. Elberse JE. Changing the health research system. Patient participation in health research [dissertation]. Amsterdam:people with a chronic illness or disability. Strengthening the voice of their representatives in the health debate and the decision making process [dissertation]. Amsterdam: VU University, 2014.

    Google Scholar 

  6. Schipper K. Patient participation & knowledge [dissertation]. Amsterdam; VU University, 2011.

    Google Scholar 

  7. Visse M. Openings for humanization in modern health care practices [dissertation]. Amsterdam; Free University Amsterdam, 2012.

    Google Scholar 

  8. Pittens C. Knowledge coproduction in health research policy and care practice [dissertation]. Amsterdam; VU University, 2013.

    Google Scholar 

  9. Wit MPT de. Patient participation in rheumatology research. A four level responsive evaluation [dissertation]. Amsterdam: VU University, 2013.

    Google Scholar 

  10. Teunissen T. Values and criteria of people with a chronic illness or disability. Strengthening the voice of their representatives in the health debate and the decision making process [dissertation]. Amsterdam; VU University, 2014.

    Google Scholar 

  11. Baur V. Participation & partnership. Developing the influence of older people in residential care homes [dissertation]. Amsterdam: Vrije Universiteit Amsterdam, 2012.

    Google Scholar 

  12. Dedding C. Delen in macht en onmacht kinderparticipatie in de (alledaagse) diabeteszorg [dissertation]. Amsterdam; VU Universiteit, 2009.

    Google Scholar 

  13. Nierse CJ, Abma TA, Broerse JEW et al. Partners in wetenschap. Mensen met een verstandelijke beperking doen mee in onderzoek. NTZ 2007;33(2):84-95.

    Google Scholar 

  14. Abma TA, Broerse JEW. Zeggenschap in wetenschap, patiëntenparticipatie in theorie en praktijk. Den Haag; Lemma, 2007.

    Google Scholar 

  15. Abma TA, Pittens CA, Visse M, Elberse JE, Broerse JE. Patient involvement in research programming and implementation: A responsive evaluation of the Dialogue Model for research agenda setting. Health expect 2014. doi 10.1111 (epub ahead of print)

  16. Teunissen GJ, Abma TA. Derde partij: tussen droom en daad. Een verkennend onderzoek naar de patientenpartij en -criteria voor onderzoek, beleid en kwaliteit bij overheden en zorginstellingen. Tijdschrift Gezondheidswet 2010;88:182-9.

    Article  Google Scholar 

  17. Baur VE, Elteren AHG van, Nierse CJ, Abma TA. Dealing with distrust and power dynamics: asymmetric relations among stakeholders in responsive evaluation. Evaluation 2010;16:233-48.

    Article  Google Scholar 

  18. Domecq JP, Prutsky G, Elraiyah T et al. Patient engagement in research: a systematic review. BMC Health Serv Res 2014;14:89.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Staley K. Summary Exploring Impact: Public involvement in NHS. Eastleigh: public health and social care research INVOLVE, 2009.

    Google Scholar 

  20. Hewlett S, Wit M de, Richards P, Quest E, Hughes R, Heiberg T, et al. Patients and professionals as research partners: challenges, practicalities, and benefits. Arthritis Rheumatism 2006;55:676-80.

    Article  PubMed  Google Scholar 

  21. Wit MPT de, Berlo SE, Aanerud GJ et al. European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Ann Rheum Dis 2011;70:722-6.

    Article  PubMed  Google Scholar 

  22. Leeb BF, Sautner J, Leeb BA, Fassl C, Rintelen B. Lack of agreement between patients’ and physicians’ perspectives of rheumatoid arthritis disease activity changes. Scand J Rheumatol 2006;35:441-6.

    Article  CAS  PubMed  Google Scholar 

  23. NCFS Klankbordgroep onderzoek. Zie: http://www.cfonderzoek.nl/wat-doet-ncfs/patientenparticipatie/klankbordgroep.

  24. Staniszewska S, Haywood KL, Brett J, Tutton L. Patient and public involvement in patient-reported outcome measures: evolution not revolution. Patient 2012;5(2):79-87.

    Article  PubMed  Google Scholar 

  25. Haywood K, Brett J, Salek S et al. Patient and public engagement in health-related quality of life and patient-reported outcomes research: what is important and why should we care? Findings from the first ISOQOL patient engagement symposium. Qual Life Res 2014 (epub ahead of print)

  26. Wit M de, Abma T, Koelewijn-van Loon M, Collins S, Kirwan J. Involving patient research partners has a significant impact on outcomes research: a responsive evaluation of the international OMERACT conferences. BMJ Open 2013;3(5).

  27. Nierse CJ, Schipper K, Zadelhoff E van, Griendt J van de, Abma TA. Collaboration and co-ownership in research: dynamics and dialogues between patient research partners and professional researchers in a research team. Health Expectations 2012;15:242-54.

    Article  PubMed  Google Scholar 

  28. Schipper K, Abma TA, Zadelhoff E van, Griendt J van de, Nierse C, Widdershoven GAM. What does it mean to be a patient research partner. Qualitative Inquiry 2010;16:501-10.

    Article  Google Scholar 

  29. Abma TA, Nierse C, Widdershoven G. Patients as partners in responsive research: methodological notions for collaborations in mixed research teams. Qualitative Health Research 2009;19(3):401-15.

    Article  PubMed  Google Scholar 

  30. Shea B, Santesso N, Qualman A, Heiberg T, Leong A, Judd M, et al. Consumer-driven health care: building partnerships in research. Health Expect 2005;8(4):352-9.

    Article  PubMed  Google Scholar 

  31. Pittens CA, Vonk Noordegraaf A, Veen SC van, Anema JR, Huirne JA, Broerse JE. The involvement of gynaecological patients in the development of a clinical guideline for resumption of (work) activities in the Netherlands. Health Expect 2013. (epub ahead of print)

  32. Teunissen GJ, Visse MA, Laan D, Boer WI de, Rutgers M, Abma TA. Patient involvement in lung foundation research: A seven year longitudinal case study. Health2013;5(2A):320-30.

    Article  Google Scholar 

  33. Smit C. Een nieuwe horizon. De toekomst van de patientenbeweging in Nederland. Hoogwoud: Kirjaboek, 2012.

    Google Scholar 

  34. Legare F, Boivin A, Weijden T van der et al. Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs. Med Decis Making 2011;31:E45-74.

    Article  PubMed  Google Scholar 

  35. Wit M de, Kvien TK, Gossec L. Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology. RMD Open 2015;1:e000129. doi:10.1136/rmdopen-2015-000129.

    Google Scholar 

  36. NVN. De rol van patiënten in onderzoek. Bussum: Nierpatienten Vereniging Nederland, 2013.

    Google Scholar 

  37. Elberse JE, Wit MPT de, Velthuis HMA et al. Netwerk Onderzoekspartners in de reumatologie. Getrainde patientenvertegenwoordigers betrokken bij onderzoek [translation: Educated patient representatives involved in research]. Dutch J Rheumatol 2009;4:40-4.

    Google Scholar 

  38. Bovenkamp HM van de. The limits of patient power. Examining active citizenship in Dutch health care [dissertation]. Rotterdam: Erasmus University, 2010.

    Google Scholar 

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

    Book  Google Scholar 

  40. Elberse JE, Caron-Flinterman JF, Broerse JE. Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives. Health Expect 2011;107:225-39.

    Article  Google Scholar 

  41. Keizer B, Bless R. Pilot study on the position of health consumer and patients’ organisations in seven EU countries. Den Haag: ZonMW, 2010:54.

    Google Scholar 

  42. Teunissen T, Visse M, Boer P de, Abma TA. Patient issues in health research and quality of care: an inventory and data synthesis. Health Expect 2013;16(4):308-22

    Article  PubMed  Google Scholar 

  43. PGOsupport. PGOacademy. Zie: http://www.pgosupport.nl/page/Academie.

  44. Wit MP de, Elberse JE, Broerse JE, Abma TA. Do not forget the professional – the value of the FIRST model for guiding the structural involvement of patients in rheumatology research. Health expect 2013. (epub ahead of publication)

  45. Visse M, Kruif A de, Roukema B. ‘Ontmoetingen op Maat’ – Ontmoetingen tussen zes mensen met een cardiovasculaire aandoening en zes onderzoekers. Amsterdam: VU medisch centrum, Metamedica, 2012.

    Google Scholar 

  46. Staniszewska S, Brett J, Mockford C, Barber R. The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. Int J Technol Assess Health Care 2011;27:391-9.

    Article  PubMed  Google Scholar 

  47. Participatiekompas. Zie: http://www.participatiekompas.nl

  48. INVOLVE. Website Supporting public involvement in NHS, public health and social care research. Zie: http://www.invo.org.uk/.

Download references

Author information

Authors and Affiliations

  1. Stichting Tools, Zaltbommel, The Netherlands

    Maarten de Wit

  2. De Hart&Vaatgroep, Den Haag, The Netherlands

    Daphne Bloemkolk

  3. Longfonds, Amersfoort, The Netherlands

    Truus Teunissen

  4. PGOsupport, Utrecht, The Netherlands

    Annemiek van Rensen

Authors
  1. Maarten de Wit
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Daphne Bloemkolk
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Truus Teunissen
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Annemiek van Rensen
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Annemiek van Rensen.

Additional information

Correspondentieadres

Annemiek van Rensen, PGOsupport, Daltonlaan 600, 3584 BK Utrecht, tel. 030-2040707, e-mail: a.vanrensen@pgosupport.nl

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

de Wit, M., Bloemkolk, D., Teunissen, T. et al. Voorwaarden voor succesvolle betrokkenheid van patiënten/cliënten bij medisch wetenschappelijk onderzoek. Tijdschr Gezondheidswet 94, 91–100 (2016). https://doi.org/10.1007/s12508-016-0039-9

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12508-016-0039-9

Search

Navigation