Involving patients in research and development
Professor Thierry Troosters, Vice president of the European Respiratory Society gives us an insight into how and why patient involvement is so important
The many ways that patients can influence research
Classically investigators conducting clinical trials are grateful for their patients to be included in studies as subjects to test new interventions or innovative technologies. There are many more ways for patients to be partners in research. This can be in all stages in research: from generating the idea’s and identifying the gaps, be involved in qualitative studies to help shed light on complex issues such as patient experience, user experience with complex interventions, compliance or drop-out, all the way to helping disseminate the results obtained and lobby with policy makers to ensure that successful studies make it into clinical practice.
Funding agencies have increasingly more attention to involve patients in the research process and organisations like the European Respiratory Society have paid attention to engage patients in setting priorities and undertake actions in support of lung health grounded on scientific findings. Scientists that involve patients and report their results at the annual conference can apply for specific ‘grants’ as we feel this research is very important.
Why is it important to involve patients?
Involving patients is important as patients provide a complementary view on clinical relevance of findings, or burden of a study design. In the IMI-JU PROactive project protocols related to physical activity were reviewed by all stakeholders, including patients for their burden, relevance and impact on privacy of patients. In our qualitative studies, interviews with patients and focus group sessions helped shape the development of a novel patient reported outcome tool that captures physical activity experience by patients with COPD. At the end of the project a patient organization, together with ERS helped to disseminate the main findings of the PROactive studies towards the patient public at each of the sites involved. As the scientific coordinator of the project I’m convinced that the success of this publically and industry funded project would have been much less if patients were not so intimately involved. The Patient Reported Outcome was much more credible to regulators as the development was driven directly by patient experience.
Why it is important that you get involved
One possible pitfall is that patient involvement will be restricted to ‘professional patients’ that may not be reflective of the general patient. Care should be taken that the views of patients are truly reflective of the day-to-day problems or solutions of patients. Patient experiences are unique and it takes more than one, or a few patients to capture the diversity. This is particularly true also in policy documents or guideline development. A scientific communication (like a statement or a guideline) cannot be driven by the opinion of one patient, only.
It is therefore important that as many patients as possible actively partner with the research community so that the whole pallet of problems can be taken into account. The European Lung Foundation, through their partnership with the European Patient Ambassador Program does an excellent job in preparing patients to step up to the task discussing patient related problems with other stakeholders: policy makers, scientists, industry and fellow patients. You cannot underestimate the difference it makes in research and ultimately patient care to have patients represented and representative patients all stages of the bench-to-bedside chain and then further into the policy chain to make things happen.
A big thank you to all patients involved somehow and somewhere in research and development. Your energy is our inspiration.