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European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects
  1. M P T de Wit1,
  2. S E Berlo2,
  3. G J Aanerud3,
  4. D Aletaha4,
  5. J W Bijlsma5,
  6. L Croucher6,
  7. J A P Da Silva7,
  8. B Glüsing8,
  9. L Gossec9,
  10. S Hewlett10,
  11. M Jongkees11,
  12. D Magnusson12,
  13. M Scholte-Voshaar13,
  14. P Richards14,
  15. C Ziegler15,
  16. T A Abma1
  1. 1Department of Medical Humanities, VU Medical Centre, Amsterdam, The Netherlands
  2. 2Department of Paediatric Immunology, University Medical Centre Utrecht, The Netherlands
  3. 3National Resource Centre for Rehabilitation in Rheumatology, Diakonhjemmet Hospital, Oslo, Norway
  4. 4Medical University of Vienna, Vienna, Austria
  5. 5Department of Rheumatology and Clinical Immunology, University Medical Centre Utrecht, Utrecht, The Netherlands
  6. 6Arthritis Research UK, Chesterfield, UK
  7. 7Serviço de Reumatologia, Hospitais da Universidade de Coimbra, Coimbra, Portugal
  8. 8EULAR Secretariat, Zurich, Switzerland
  9. 9Rheumatology B Department, Paris Descartes University, Cochin Hospital, Paris, France
  10. 10Department of Health and Life Sciences, University of the West of England, Bristol, UK
  11. 11EULAR Task Force, Leiden, The Netherlands
  12. 12Reumatikerforbundet, Stockholm, Sweden
  13. 13Dutch League of Arthritis Patient Associations, Amersfoort, The Netherlands
  14. 14OMERACT Patient Panel, Academic Rheumatology, University of Bristol, Bristol, UK
  15. 15Danish Network of Patient Research Partners, Copenhagen, Denmark
  1. Correspondence to M P T de Wit, Department of Medical Humanities, VU Medical Centre, Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands; martinusdewit{at}hotmail.com

Abstract

Objective To develop recommendations to enable successful inclusion of the patient perspective in European League Against Rheumatism (EULAR)-funded scientific research projects.

Methods The EULAR standardised operational procedures for guideline development were followed. A systematic literature review was presented during a first task force meeting, including 3 rheumatologists, 1 rheumatologist/epidemiologist, 2 allied health professionals, 2 representatives of arthritis research organisations and 7 patient representatives, resulting in 38 statements. A Delphi method was carried out to reduce and refine the statements and agree on a set of eight. Next, a survey among a wider group of experts, professionals and patient representatives (n=42), was completed. Feedback from this wider group was discussed at the second meeting and integrated in the final wording of the recommendations. Subsequently, the level of agreement of the group of experts (n=81) was re-evaluated.

Results The project resulted in a definition of patient research partner and agreement on a set of eight recommendations for their involvement in research projects. These recommendations provide practical guidance for organising patient participation, capturing (1) the role of patient research partners, (2) phase of involvement, (3) the recommended number, (4) recruitment, (5) selection, (6) support, (7) training and (8) acknowledgement.

Conclusion Collaboration between patients and professionals in research is relatively new. Trials or effectiveness studies are not yet available. Nevertheless, it is possible to define recommendations for the inclusion of patients in research following a solid expert opinion based consensus process.

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Footnotes

  • Funding This study was supported by a research grant from EULAR (PAR009).

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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