Discover the added value of involvement

Patient involvement for greater impact

More and more national and international literature is being published on the impact of patient involvement on the quality and benefits of research. See the information on the NHS website, for example, on the ethical aspects of primarily clinical research (including a report dating back to 2016). See the website of the Public Involvement impact Assessment Framework (PiiAF) or the products of the IMI PARADIGM project.

According to these sources, patient involvement leads to:

• more relevant research 
  with a greater likelihood of results that meet the needs and expectations of patients.
• a better understanding of what patients find acceptable
  in particular for potentially controversial or sensitive subject matters.
• the acceleration of the process of informed consent
  future research participants will be able to make more informed decisions about whether they wish to participate, because they have a better understanding of the research and the potential risks.
• improved experience for research participants during the study
  because the research conditions will be better suited to the options and wishes of the participants. This reduces the risk of participants dropping out prematurely.
• more and better communication of the research results
  the research participants, the entire relevant patient population and the general public will all take note of the results and will facilitate smooth implementation. 

A member of the Experts by Experience Group of the Harteraad patient organisation provided a perfect example of the importance and value of the patients’ standpoint. Clinical research failed due to a high dropout rate of participants. Members of the Experts by Experience Group play a role in scientific research in various ways, including as advisers during the design of the research, but also during the research itself in a user committee, for instance. Three members of the Experts by Experience Group share their vision during a conference on clinical research (CVCT in Washington) in this video (in Dutch).

Roadmap for involvement in the development of medicines

What and how patients contribute to research, and the added value thereof, is clearly explained in the following video made by EUPATI. This European education and training institute for patient representatives has produced a roadmap for involvement in the development of medicines that is also suitable for other types of research.

Patient involvement reduces ‘unnecessary’ research

Research for research’s sake is now a thing of the past. Funding bodies increasingly require research questions to be aligned with a research or knowledge agenda. A good research agenda reflects the priorities of all relevant stakeholders. This also includes the patient target group.

Ian Chalmers (the initiator of the James Lind Alliance, among other things) stated in an article in the Lancet (2014) that a decision on the funding of research should take into account the themes that end users consider relevant. This increases the value of the research and reduces the risk of unnecessary research (‘research waste’).

Patient involvement inspires

• Patients are often highly motivated to contribute to research. You will gain an enthusiastic – but also critical – partner!
• A discussion with an expert by experience at the start of a project will make it clear immediately why the research is so important. This puts a face to the end user of the project.
• Patients’ unique perspective broadens your own view of the study. It can give you a push in the right direction if you temporarily lose sight of the entire picture or it will provide you with an additional argument if you have to make a difficult decision.

Many researchers have already preceded you and were inspired by collaboration with patients in their research. You can find various experiences on the website, but we cannot provide you with hard figures or extensive literature.

Get started. Even if it’s just having a cup of coffee and an introductory conversation with patients. Learn from your experiences and share them with colleagues. If you have any questions or would like to share your experiences with a wider audience, do let us know!