Patient and public involvement is now considered a key part of the process in health research. People who have experience of living with a condition are experts in this area – whether they are patients, parents, carers or loved ones. Patient input could include contributing to new guidelines, speaking at conferences, inputting into research projects, and producing patient information.
Over the last 5 years, the European Lung Foundation and European Respiratory Society have developed and continually learnt from their patient input process. They are now regarded as leaders in the field of patient involvement in international research teams, guideline development and public health information.
A new article has used this valuable experience to develop a guiding set of principles. The principles can be used by researchers as a best practice document for involving patients in their research and wider activities.
The four guiding principles are:
The article provides practical suggestions for how these principles can guide patient involvement. It also gives suggestions on how to tackle some of the challenges researchers might experience in trying to involve patients.
The guiding principles were produced through discussion in an online workshop with representatives from the patient, clinician, researcher and pharmaceutical stakeholder groups. Read the original research paper for all the suggestions and practical advice:
If you are interested in finding out more about patient input, or learning about the basic skills and knowledge needed to be a patient representative, take a look at ELF’s European Patient Ambassador Programme. This free online self-learning programme takes you through different modules and introduces you to a range of topics linked to patient input.
Find out more about ELF’s patient involvement activities and opportunities to get involved: https://europeanlung.org/en/get-involved/how-we-work-together-with-patients-and-care-givers/
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