By Dr Natasha Ratcliffe, Research Involvement Manager, Parkinson’s UK – written on behalf of the Charities Research Involvement Group

Published: 16 October 2019

Patient and public involvement is now recognised as a key part of the research process, and for many years charities have been playing a leading role in supporting good patient and public involvement in research.

I’m fortunate to be part of a wonderful group called the Charities Research Involvement Group - a group of over 35 charities who come together to share experience and best practice for involvement. We also work together to develop resources and tools to support researchers and people affected by health conditions to work together.

Many of our organisations have been supporting patient and public involvement in academic research for a while. But more recently, some of us have started working with pharmaceutical companies to support them to involve people affected by health conditions in their research and development programmes.

While the principles of good involvement remain the same, we quickly learned that supporting patient and public involvement in research led by pharmaceutical companies presents a number of different challenges in comparison to the world of academia. For example, when we began supporting pharma with patient involvement at Parkinson’s UK, we suddenly found ourselves having to deal with contracts and compliance and codes of practice, and we felt quite out of our depth!

As more members of the Charities Research Involvement Group began to explore opportunities to work with pharma, we identified a gap in the information and support out there for this kind of work. In July 2018, we co-hosted a meeting with the Association of the British Pharmaceutical Industry (ABPI) to discuss what needed to be done to improve collaboration between charities and pharma companies. Colleagues from each sector came together to share their experiences, and together we identified a list of priority areas to focus on over the next year.

One of the priorities was guidance for charities on the processes involved when it comes to supporting researchers from pharma with patient and public involvement. And so, a group of us from Alzheimer’s Society, Asthma UK, Autistica, Cancer Research UK, MS Society and Parkinson’s UK came together to develop this.

In April this year we hosted a workshop with other Charities Research Involvement Group representatives, including patient and public involvement contributors, to discuss what the guidance needed to contain. Since then, we have been working alongside lead author of the guidance Claire Nolan, a freelance patient and public consultant, and Bec Hanley,  facilitator of the Charities Research Involvement Group, to develop a document that aims to provide practical, step-by-step advice to charities who are considering supporting industry with patient and public involvement.

The guidance, developed in collaboration with Health Research Charities Ireland, covers some of the key stages involved in developing meaningful and productive relationships with industry to support patient and public involvement, including:

• developing a policy within your organisation for working with industry
• where to start in developing relationships
• advice on how to manage the practicalities of working together, including contracts and payments

Importantly, the guidance has also been shaped by the experiences of patient and public involvement contributors, as well as colleagues from the pharmaceutical industry, helping ensure that it captures a broad range of experiences of this type of collaboration.

The guidance is available here.

“I’m really happy to see this guidance launched and am very proud to have been a part of developing it. There are so many great charities that are already supporting patient and public involvement in academic research, but who just aren’t sure where to start when it comes to working with industry. I hope this guidance helps them take that step and we can see more people affected by health conditions as key stakeholders in the development of medicines.” Claire Nolan, lead author.