Nivel: Handbook on participatory research aims to facilitate collaborations with patients

Handbook on participatory research aims to facilitate collaborations with patients

Nivel researchers in collaboration with the European Cancer Organisation have developed a Handbook to guide researchers who wish to involve patients and the public in their research. This so-called ‘patient and public involvement’ (PPI) can improve the quality and relevance of research and reduce poor or biased reporting of results. The Handbook and accompanying checklist aim to support researchers engaged in participatory research by helping them navigate the complexity and dynamics of working together with patients and relatives.

Patients and their relatives are increasingly involved in research that concerns them. This is also the case in the EUonQol project that aims to assess the quality of life of cancer patients in Europe. Nivel is part of the EUonQoL consortium which is composed of research institutions, cancer centres, as well as scientific, professional, and patient representative organizations across Europe involved in cancer research. The patients and caregivers in this consortium will be involved as co-researchers throughout all project-related activities.

Handbook supports researchers engaging in participatory research

A Handbook and checklist were developed to facilitate and standardize collaborations in participatory (cancer) research between researchers and co-researchers. Inexperienced researchers in participatory research can use the Handbook as theoretical and practical guidance in shaping and executing their research. More experienced researchers can employ it to refresh their memories and guarantee comprehensive consideration of all relevant aspects in their collaboration with co-researchers.

Involving patients and the public improves quality and relevance of research

Patient and public involvement (PPI) in health research means that this research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. Meaningful involvement of patients and the public can improve relevance of research, reduce poor or biased reporting of results, and bring science and society closer together. It is also argued that patients have a right to be involved in research that concerns them and that reducing the knowledge gap between researchers and patients is a moral duty of researchers.

Patient and public involvement requires preparation

The Handbook addresses good practices of involving co-researchers in research activities to help researchers navigate the PPI process. Researchers and co-researchers preferably determine together how and in what activities co-researchers are involved. Practicalities such as reimbursements and training for co-researchers need to be organized in advance. During the execution of the research, mutual trust, transparent communication and openness to other opinions are essential. In this way co-researchers can feel safe, able, and respected to share their experiences, preferences, and recommendations with the research team.

About EUonQoL

The goal of the EUonQoL project is to measure what matters for cancer patients and survivors in Europe. For this purpose the EUonQoL consortium aims to develop, pilot-test and implement a EUonQoL-Kit that can help to assess quality of life. This will be a unified system for the assessment of quality of life based on existing questionnaires, evaluations, and preferences of cancer patients and caregivers. Ultimately, the toolkit could be used all over Europe in research, healthcare and policy. Nivel collaborates with the European Cancer Organisation (ECO) in the facilitation of involvement of co-researchers. More information is available on the website of EUonQol.