Patients as partners in research

Patients as partners in research – a debate on inclusion at the Mission: Possible symposium

iCAN, the flagship of digital personalised cancer medicine, and the Finnish Cancer Institute Foundation organised the symposium Mission: Possible – Delivering Precision Cancer Medicine on 22-23 September 2022. The event was attended by around 300 researchers and students on site in Helsinki and on both days the programme was streamed to an audience of 270 people at best. In addition to the scientific programme, the symposium featured a talk on the iCAN Patient and Citizen Engagement Advisory Council (POTKU) initiative on patient involvement in research.

What does patient involvement bring to research?

Bettina Ryll (PhD, MD, member of iCAN’s Scientific and Impact Advisory Board) spoke about the benefits and goals of patient involvement and practical ways to deepen mutual understanding. Funders are increasingly demanding inclusion, but there are many carrots for increasing inclusion beyond the stick. Involving patient representatives increases the social accountability and transparency of research. It can also help to shake up habitual patterns of thinking and improve thinking. Together, these increase the relevance and impact of research.

In recent weeks, concerns about the poor prospects for research funding have been raised again in the Finnish debate. Research needs resources, and patients and citizens – and policy makers – need to understand how research can improve care and health.

Tips to get started

POTKU is developing forms of collaboration within the iCAN flagship together with iCAN researchers, but there are also opportunities for first steps of collaboration outside iCAN.

Patient organisations can help in finding suitable patient representatives. As an example of such collaboration, Sampsa Hautaniemi told the symposium panel about her positive experience of patient representation, including in the DECIDER project. Patients’ perspectives on research designs, consent forms and patient information leaflets can be sought, for example, from the HUS Research Council presented by Aino Kormilainen or EUPATI Finland.

How do patients benefit from basic research?

Basic cancer research deals with the general biomechanics of the disease without involving patients in the research, except in a sampling or trust role, which allows for representative patient involvement. The actual involvement of research patients takes place in so-called translational research and clinical trials. In iCAN, POTKU has invested in identifying the patient perspective also in basic research, but we still have work to do.

The symposium was well attended by researchers involved in basic research. The panel’s audience questions and coffee table discussions raised concerns about the impact on funding for basic research of emphasising patient benefits in funding decisions, or involving lay people in decision-making. Jarmo Wahlfors, representing Finnish funders on the panel, said that patient involvement has been discussed at the Cancer Foundation and is making inroads within the Cancer Foundation, but the forms and practices are still a matter of reflection.

The overarching aim of iCAN is to benefit patients, and we at POTKU have discussed a lot of this aspect when commenting on iCAN project proposals, and for example how our own patient involvement influences how important research topics are perceived to be. Putting the applications in order would not be an easy or pleasant task for our advisory board either. Nor is this what we have been asked to do.

However, as patients, we assure you that the researchers’ concern that patients and the public will not value basic research is misplaced. Well-constructed clinical trials do of course bring tangible benefits to those of us who are currently suffering from cancer and that is valuable. However, until a cure is found for all cancers, or a treatment that allows a good quality of life despite cancer, basic research is needed. It is important to see where research fits into the puzzle of understanding cancer (and future treatments). It is important to help us lay people understand what the (perhaps distant) future goal of patient care is. We believe that thinking about patient benefit, even in the context of basic research, is a useful challenge, though by no means an easy one.

A group photo of the Mission: Possible symposium participants at Kalastajatorpa beach on 22 September 2022.
A group photo of the Mission: Possible symposium participants at Kalastajatorpa beach on 22 September 2022.

Moving forward together

Anything new takes time – and so does a change in research culture, where research subjects first become research followers from the sidelines and eventually partners. Strengthening patient involvement requires new learning and new skills for researchers and patients alike. An open discussion about objectives, expectations and roles is important.

By Matti Santalahti, President of POTKU and Marketta Liljeström, Member of POTKU

Image courtesy of Gerd Altman/Pixabay

Group photo: Alexandra Gylfe