Public and patient involvement in research
As patients and the public are the end users of most research it is important to know that it addresses the issues that they think are important, Professor Nicky Britten explained to a near-full venue during the Sahlgrenska Academy Seminar on PPI; public and patient involvement in research. Patients and the public can and should be involved at every stage of research; from formulating the research questions, all the way through undertaking the research to disseminating the findings.
Professor Nicky Britten and Kath Maguire presenting at their Sahlgrenska Academy Seminar.
Nicky Britten and Associate Research Fellow Kath Maguire had been invited by Professor Inger Ekman, Centre Director of the University of Gothenburg Centre for Person-centred care GPCC. They both work at the University of Exeter Medical School, with the PenCLAHRC Public Involvement team. This is one of 13 national CLAHRC networks in the U.K., which are funded by The British National Institute for Health Research (NIHR) and which undertake high-quality applied health research focused on the needs of patients and support the translation of research evidence into practice in the NHS. http://clahrc-peninsula.nihr.ac.uk/ .
Kath Maguire reported that most patients who get involved in research feel that they are able to give something back that way and that their often painful experiences are made useful. It becomes a reciprocal relationship between the patients and research. Kath used her own experience as a starting point and catalyst for her PhD research project entitled Public and Patient Involvement in Theory and in Practice. She got engaged in a PPI reference group herself as a parent of a child with severe illness, and her involvement in research has been life changing.
Swedish author Åsa Moberg, Professor Inger Ekman, Professor Nicky Britten and Kath Maguire.
Directly following the seminar a smaller workshop was held which attracted a varied range of participants. They were given tools to work in groups thinking about how they could involve public and patients in various stages of their own research.
Some practical tips to take away from the day are that it is important to have many and flexible ways that the patients and public can become involved and to make sure information is not too complicated. It is also important to get quite a few participants involved in a project to get a wide representation, and also because patients are by nature often prohibited from taking part due to poor health. To show that their contribution is valuable you must also remunerate them for their time. Always also remember that PPI is a complex set of activities and relationships which involves people.
A question that often gets asked is how one can know how representative patients involved in a study are for their patient group. Professor Britten replies to this with another question: How representative are the researchers? Each of us is a person, with our own experiences, resources, backgrounds and agendas, but if you get a group of patients involved they are going to have a range of these. It is also important to draw PPI representatives from the full spectrum of the population in terms of for example age, gender and ethnic diversity, recognising that people are affected differently by different issues and health conditions.
Participants in the workshop included Patricia Bacchus from the Action Research Centre at the University of Cincinnati and Helena Grönkvist and Malin Ander from The University of Uppsala’s U-Care research project. They all agreed that the patient’s voices need to be heard, and that PPI makes sure research is relevant and addresses the right issues. They were thrilled to get this opportunity to get some tools, sort their thoughts and get some other perspectives on this issue.
Nicky Britten and Kath Maguire have kindly shared their presentation and the documents, including tips and resources from the workshop. You can find them here.
Nicky Britten is Professor of Applied HealthCare Research, University of Exeter Medical School, Member of Strategic Executive Group and Theme Lead for Person Centred Care, National Institute of Health Research Collaboration for Leadership in Applied Health and Care Research for the south west peninsula (NIHR PenCLAHRC). Professor Britten is a medical sociologist with particular interests in lay views of prescribed and non-prescribed treatments, patient-doctor communication about prescribing, the management of multiple medications in chronic illness, the synthesis of qualitative research, and user involvement in research. Within PenCLAHRC she has particular responsibilities for patient and public involvement, person-centred care, and the internal evaluation. Her work has contributed to the growing acceptance of qualitative research within medicine, and she has helped develop the method of meta-ethnography for the synthesis of qualitative research. She has published over 100 articles in peer reviewed journals as well as three books and numerous other publications. She is an Honorary Fellow of the Royal College of General Practitioners.
Kath Maguire is an Associate Research Fellow in Public Engagement at the University of Exeter Medical School.
After caring for a child with life limiting conditions, she returned to education as an adult and went on to work on community empowerment and learning in the voluntary sector. She became a lay member of National Institute for Health Research funding panels and joined the PenCLAHRC Public Involvement Group. Through this involvement she recently completed a PhD research project entitled Public and Patient Involvement in Theory and in Practice.