Share4Rare toolkit for patient advocacy

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Patient involvement in academic research

A list of practical recommendations, based on available evidence and expert opinions, was published in 2016 by PGOsupport, a Dutch networking organisation that supports patient groups in order to share expertise (de Wit et al., 2019). However, some of the recommendations still regard patients as passive partners awaiting directions, but not as a real research-driving group. The list contains 9 recommendations to orient patients and researchers in their collaboration:

  1. Phases of involvement
  2. Patient role
  3. Recruitment and selection
  4. Support
  5. Funding
  6. Training
  7. Evaluation
  8. Visibility
  9. Recognition

Other patient organisations have also crystallised their own concepts on what good clinical research means for patients.  For example, Dutch Melanoma Foundation has set a revising protocol and MPNE has established the minimal criteria to follow when reviewing clinical trials (as in the example below).

  • Research question - relevance and utility of research for patients
  • Design of trials - open label, single arm, randomisation and cross-over, modern designs?
  • Informed Consent Form - adequately reflects the trial protocol?
  • Other ethical issues - e.g. too many biopsies, no travel reimbursement, patients data
  • Who is who  -  coordinator, partners, source of funding
  • Accuracy of the scientific claims- references and proper use of references
  • Willingness to share results
  • Level of involvement  - Steering Committee, partners, funding

(MPNE and Dutch Melanoma Foundation, 2018, unpublished)

Last modified
01 February 2021
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