Top tips for involving patients in your research

November 2020

As CRUK's Natalia Bartolome Diez put it, 'When done well, patient involvement can improve the quality and relevance of research, and is increasingly becoming a funding application requirement.' CRUK has asked researchers and people affected by cancer for their top tips on getting patient involvement right in all types and stages of research.

Here's a brief rundown of what they found:

1. Start early
The earlier you start planning patient involvement in your study, the more likely you are to involve the right people at the right time, using the most appropriate methods. Starting early helps you to gain deeper insights from the people you involve. It gives you time to embed their ideas in your research and make impactful changes as a result.

2. Take time to plan
The key to involving people affected by cancer meaningfully is planning. Taking time to think about the why, what, when and how of patient engagement will help you to identify key areas of your research that will benefit from patient involvement, and what this involvement should look like.

'Notify charity patient involvement partners at the earliest opportunity to develop your patient involvement plan effectively and with the greatest amount of advice and support' – Precision Panc Researcher

3. Involve the right people
You must find people affected by cancer who are able to give you the insight and information you need. Be clear about the requirements of the role and identify the skills, experience and personal attributes that the people participating in your activity will need to have.

4. Provide lay information
Explaining your study and general research topic to the people you are involving in your research will enable them to accurately feed into discussions. Information should be provided in clear, succinct, plain English. Don't assume that everyone you involve has the same abilities.

5. Establish ways of working
Ensuring that you and the people affected by cancer who become involved in your research feel comfortable and have positive experiences from the start is vital to encourage quality insight and feedback. It can be intimidating to enter a room full of researchers and muster the courage to dispute elements of their research or make suggestions. Therefore, the researchers and participants in involvement activities should agree on ways of working.

'During these partnerships of people affected by cancer and researchers, you find that it is the person that is being treated and not just the illness' – Patient Representative

6. Don't reinvent the wheel
Make full use of the resources available from different charities, rather than trying to create a new way of doing patient involvement. CRUK can help you identify involvement opportunities at any stage of your research and support you in their delivery.

'I was really impressed by my visit to the CRUK Cancer Insight Panel – they provided a unique perspective on my research plans and I came away buzzing with new ideas and inspiration' – Translational Researcher

7. Always provide feedback
Many people affected by cancer start doing patient involvement because they want to 'give back' and improve outcomes for future patients with cancer. Patient involvement empowers them to influence change and provides a sense of purpose. For this reason, it is important that those involved are made aware of the impact and consequences their feedback and insight had on research.

The above is an abbreviated version of CRUK's Research Feature. Click here to read the full article.


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