Article Text

OP0263-PARE Patient Involvement in E-Health Research and Intervention Development
  1. H. van Duijn1,2,
  2. M. Ferwerda1,
  3. M. Tomas1,
  4. H. van Middendorp1,
  5. H. Ros1,3,
  6. A. Evers1
  1. 1Medical Psychology, Radboud University Medical Centre, Nijmegen
  2. 2Reumapatiëntenbond, Dutch League against Rheumatism, Amersfoort
  3. 3Psoriasis Organisation The Netherlands, Rijswijk, Netherlands


Background Results from early E-health research for patients with several chronic somatic conditions including rheumatoid arthritis are promising [1]. Despite obvious advantages of E-health interventions for patients, research also shows high drop-out rates and low adherence, and sometimes only part of a patient population is willing to use the interventions. Patient involvement in E-health innovation projects could make the projects more attuned to the needs and wishes of patients. Although patient involvement in research and intervention development is stimulated in general [2] and also specifically for rheumatoid arthritis [3], little is known about the value of involving patients in E-health projects and is mainly based on experiential descriptions.

Objectives In different E-health innovation projects for somatic conditions, including rheumatoid arthritis, patient involvement as well as patient satisfaction and user friendliness of the resulting intervention were assessed using questionnaires and interviews with different stakeholders, including patient representatives, researchers, and intervention participants.

Methods A questionnaire was developed in cooperation between patients and researchers, which was filled out by all stakeholders. Patient representatives and researchers took part in (group) interviews to gain more insight into advantages and disadvantages of patient involvement in E-health research and intervention development. Descriptive and t-test analyses were performed.

Results Patients are currently involved in E-health innovation projects. This involvement varies widely in both content and degree. Usually, involvement is more prominent in the development of the intervention than in research. Patient representatives and researchers have similar views on the potential benefits and difficulties of patient participation in E-health innovation projects, and are positive about patient involvement. Researchers do however report more concerns about time constraints and tend to be more critical about the resulting interventions. Results from the interviews show that patient involvement is seen as a necessity to develop useful E-health interventions. Preliminary results indicate how to resolve problems and ensure effective involvement of patients in E-health innovation projects.

Conclusions Although patient involvement in E-health developments becomes more common practice, patient involvement in research is less prominent. Researchers and patient representatives are satisfied with the involvement of patients and the resulting interventions. Future results could demonstrate which degree of involvement is needed to obtain effective and patient-friendly interventions and research.


  1. Cuijpers, P., Van Straten, A., & Andersson, G. (2008). Internet-administered cognitive behavior therapy for health problems: A systematic review. Journal of Behavioral Medicine, 31(2), 169-177.

  2. Boote, J., Baird, W., & Sutton, A. (2011). Public involvement in the design and conduct of clinical trials: A review. International Journal of Interdisciplinary Social Sciences, 5, 91-111.

  3. 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.

Acknowledgements We would like to thank ZonMw (The Netherlands Organisation for Health Research and Development) and the VSBfonds for their financial contribution to this project, and would like to thank prof.dr. Jan Kremer, prof.dr. Judith Prins, prof.dr. Marjolijn Sorbi, dr. Jan Vercoulen, and dr. Chris Verhaak, and their junior researchers for cooperating in this study.

Disclosure of Interest H. van Duijn: None Declared, M. Ferwerda Grant/research support from: Pfizer Inc., M. Tomas: None Declared, H. van Middendorp: None Declared, H. Ros: None Declared, A. Evers Grant/research support from: Pfizer Inc., Consultant for: Roche

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