Public involvement in Research: a growing movement


Patient and public involvement in research is increasingly recognised as an integral part of the research process. Developing active partnerships between researchers and patients and/or the public requires mutual respect and understanding as well as appropriate resourcing.

The recent “Public Involvement in Health Service Research – International Symposium”, held by the University of Sydney’s, provided an opportunity to hear from a range of disciplines in health research about how they are moving towards a model of public and patient involvement.

“It was a very interesting meeting and an excellent opportunity to hear about developments in public involvement in research in general, as well as in other fields of research apart from dementia,” said Dr Jane Thompson, CDPC dementia advocate and presenter at the conference.

“The presentations from the fields of cancer, mental health and cerebral palsy were particularly valuable.”

“Also interesting was a shift in language used to describe “us” with several presenters stating that they really didn’t like being referred to as “consumers”. There is a shift towards talking about the public or even publics in this context – consistent with international trends and the published literature.”

Jane’s presentation ‘Public involvement in dementia research in Australia: Person al reflections and political realities,” provided background of her personal experience of caring for her husband who died of Alzheimer’s disease, outlined international models for public involvement in dementia research, such as the very successful UK Alzheimer’s Society Research Network model, and some of the recent successes and challenges here in Australia.

“There are valuable lessons we can learn from, for example, cerebral palsy research where families set up their own network (the Cerebral Palsy Alliance) and cancer research where the long established Cancer Voices group has partnered with Cancer Council and established a very effective public involvement program. Perhaps we need to establish a Dementia Voices,” Jane said.

Many common themes were discussed during the symposium that included the importance of inclusive language, mutual respect, training of both the community researcher as well as the academic researcher on what co-creation in research requires, the need to acknowledge contribution of time of volunteers, and enough resourcing for their genuine involvement.

Lenore de la Perrelle and Ian Gladstone, involved in the CDPC project “Agents of Change” co-presented “Agents of Change: Public Involvement in Research” at the symposium

“The Agents of Change research project has involved people with lived experience of dementia, family care partners and members of the public in writing the submission, in deciding priorities, on steering committees, in developing training content and in collaborating with clinicians in developing implementation plan,” explained Lenore.

Dementia advocate Ian Gladstone said, “being involved in research to implement guidelines gives me hope that services for people with dementia will improve and that I can contribute to that. I find it stimulating and it gives me purpose”

An excellent resource has recently been released by the NHS R&D Forum, the Health Research Authority and INVOLVE study in the UK. Public Co-Applicants in Research –guidance on roles and responsibilities