Patient involvement in scientific activities: best practice for researchers

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:

  1. Patient partnership should be part of the culture of research projects. Projects benefit when patients are embedded in the development, governance, delivery, and dissemination.
  2. Patients and carers are experts by experience.
  3. Inclusive opportunities allow patients and carers with diverse backgrounds to enrich the project.
  4. Measuring and recognising the impact of patient and carer input into the project helps to demonstrate its value and creates opportunities to improve practice.

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.

This includes:

  • Offer an assigned person from the research team who can act as a mentor to the patient representative.
  • Ensure patients are represented and specifically consulted within the scoping and approval process for new initiatives, e.g. research studies or funding applications. Patient suggestions for improvement should be addressed before initiation of new activities.
  • Use open recruitment methods to attract patient representatives to the project. Consider targeted recruitment to increase involvement from underrepresented groups.

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:

Principles of Patient Partnership: integrating patient perspectives into ERS Clinical Research Collaborations.

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: