Involvement of patients in scientific medical research, for example, contributes to:
- better understanding, addressing and answering of patient needs (improving societal impact)
- higher willingness and ability for patients to participate (higher response rate/less drop-out)
- higher chances of receiving funding as patient involvement has become an important evaluation criterion (see for example the evaluation form used by Dutch healthcare funding agencies you will find below)
What is patient involvement?
There are numerous ways to involve patients. To visualize patient involvement, the image of the ladder of engagement can be used. The higher the patient is on the ladder, the larger the influence. The participation of patients as research subjects forms the lowest step of the ladder. In a step higher on the ladder patients are giving information or advice. The highest step on the ladder involves research where patients form the driving force and decide what is studied and how. Patient involvement is possible and can be recommended for each kind of research, from patient-centered to fundamental research.
How to involve patients in medical research?
30 representatives from 24 renowned Dutch organizations reached consensus on a set of 9 recommendations for successful patient involvement in scientific research. These recommendations are:
- Involve patients in various phases of the research, preferably as early as possible.
- Organize contributions from patients in different rolls.
- Define recruitment criteria: different forms of participation require different competencies & skills.
- Organize support for patient representatives.
- Budget funding for patient participation.
- Train patient representatives and researchers.
- Regularly evaluate the process of patient participation and mutual expectations/contributions.
- Make the outcomes (both positive and negative) of patient participation visible.
- Recognize patients' contributions.
Examples of good practices
The Chromosome 6 Project
A research project initiated and funded by parents of children with a rare genetic condition. Via a parent support group on Facebook, children from over the whole world have been included in this study. This made it possible to study the effect of a chromosome 6 disorder on the development of children.
The patient advisory board of the Groningen Research Institute for Asthma and COPD (GRIAC)
The advisory board of patients with asthma and COPD meets 4 times per year to review studies at an early stage of project development through to hearing final reports of completed studies. The patients’ input helps with ensuring the research is relevant and the outcomes are clearly communicated to the end users.