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Top tips for involving patients in your research

by Natalia Bartolome Diez | Research Feature

17 September 2020

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When done well, patient involvement can improve the quality and relevance of research, and is increasingly becoming a funding application requirement. We asked researchers and people affected by cancer for their top tips on getting patient involvement right in all types and stages of research.

Patient involvement is based on the principle that research should be carried out ‘with’ or ‘by’ people affected by cancer, rather than ‘to’ or ‘for’ them. Consulting, collaborating or partnering with people affected by cancer – whether they are carers, relatives or patients – can happen at all stages of the research cycle. People affected by cancer can act as critical friends, helping researchers to understand the realities of cancer and offering new ideas.

Our ambitious Cancer Grand Challenges initiative showcases the advantages of appropriate and timely involvement of patients in large cancer research projects. But patient involvement benefits all types of research, regardless of scale.

Knowing where to begin is often the hardest part of patient involvement. Here are some top tips to get you started.

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.

Involving people affected by cancer only towards the end of a project often results in the involvement becoming a ‘tick-box’ exercise. It highlights issues that could have been addressed much earlier and uncovers suggestions that can no longer be fully incorporated.

The earlier you involve people affected by cancer in your research, the sooner they can act as your advocates. They can help you identify further involvement opportunities, make your research relevant to patients, advise on research design and accessibility, review grant applications, create lay summaries and disseminate results.

2. Take time to plan

The key to involving people affected by cancer meaningfully is planning. You need to consider four main questions:

  • Why? What problem are you trying to resolve? How will involvement help you solve that problem? Why will involvement add value? What questions do you need to ask as a discovery researcher to take the discovery science to the clinic?
  • What? What do you need people affected by cancer to do to add value to your project? What questions do people affected by cancer need to answer to solve your problem?
  • When? At what stage(s) of the research project do you need to involve people affected by cancer to achieve the added value?
  • How? Which involvement method best suits your needs? How will you find people affected by cancer to get involved? Who will you involve (and do they need any specific experience)? How many people do you need?

Taking time to answer these questions will help you to identify key areas of your research that will benefit from patient involvement, and what this involvement should look like. They will help you weigh up the pros and cons of each involvement method and to map out the necessary timelines. Involving people affected by cancer when talking through these planning stages can also be helpful. General chats, face-to-face or video interviews and group discussions can ensure that people affected by cancer are central to the research questions and can identify key opportunities.

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.

Photograph of people collaborating as part of a patient involvement focus group

For example, do you need someone who has been diagnosed with a particular type of cancer? Is experience in patient involvement important? Do those involved need to have been part of a clinical trial? Remember that different community groups will also bring a wide range of viewpoints and experiences to the table. Involving people of different ages, ethnicities and from different geographical locations is always beneficial.

When advertising the patient involvement opportunity, you should tailor the content, format and communications channels to your target audience. We recommend that you allow at least four weeks for advertising and recruitment.

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. Further guidance on how to write in lay language can be found on our Researcher Toolkit.

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.

Setting ground rules for meetings and clarifying individual roles and expectations in the research project can be very useful. Work together to agree on key values for meetings, such as respect, responsibility and support. Develop role descriptions to ensure everyone is clear about the behaviours expected of them and what they can expect in return. Agreeing on these aspects early on helps build rapport and trust, creating a comfortable environment with adequate space for quality patient involvement. Remember to induct any new members of involvement activities to the agreed ways of working. Functions, roles and relationships should be recapped as time goes by, as people tend to forget the roles of different stakeholders.

Be mindful that you may be working with vulnerable people and consider the best ways of communicating with them and their accessibility needs, so that they can contribute effectively. Ask those involved whether they prefer phone calls or emails and don’t assume that everyone prefers digital copies of resources. Be welcoming, introduce everyone in the room, rephrase scientific concepts, don’t use jargon, pause the conversation and ask whether the people involved have any questions.

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

Remember, people affected by cancer are volunteering their time to help you. Budget for their travel costs, honoraria, taxis and catering – you don’t want to leave them out of pocket. Also consider when the most convenient times to travel are and plan meetings around them. Researchers should always remember and respect the fact that patients’ voices are central to their study and should acknowledge their contributions, both formally and informally.

Finally, agree timelines for feedback in advance. People participating in patient involvement need time to read documents and make suggestions, while often having other commitments. Advise the members of your involvement activities well before time when there are decisions to be made, so that they have time to reflect and provide appropriate feedback.

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.

We can help you identify involvement opportunities at any stage of your research and support you in their delivery. Whether you want to consult people affected by cancer via a survey, facilitate a focus group or find a patient representative, we can advertise your opportunity to our Involvement Network, which is made up of over 1,200 people affected by cancer. You can also consult our Cancer Insight Panels, which are panels of roughly 15 people affected by cancer with a strong interest or experience in research and policy, electronically or via video call. Paediatric researchers can also consult our Children and Young People’s Advisory Panel.

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. And most people who participate in patient involvement act as huge advocates for the research they advise on and deserve to know the effects of their contribution.

Inform and update the members of your involvement activities about what is happening on an ongoing basis, what is being done with the information they offered and what is going to happen once the research project has ended. Finally, researchers should acknowledge the contributions of people affected by cancer in their publications, discuss the implications of their findings and celebrate with them when the research project has been completed.

Cancer Grand Challenges: a case study of patient involvement

Cancer Grand Challenges is our largest international funding programme, offering multidisciplinary teams £20 million to solve the most complex challenges in cancer research. People affected by cancer are recruited to join each Cancer Grand Challenges research team as advocates. They work closely alongside researchers to ensure that their insight is considered whenever possible. The Cancer Grand Challenges teams are using many different techniques and expertise to tackle their selected challenge, and the same applies to the advocacy work.

The Mutographs team, for example, is trying to uncover the unknown causes of cancer, collecting and analysing samples from across the world to understand the role that environment, lifestyle, genetics or habit have on the development of certain cancers. To support this work, advocates Mimi McCord and Maggie Blanks travelled to the Czech Republic to meet researchers working on the programme and find out more about the experiences of people with cancer in the country.

Meanwhile, advocates from the PRECISION and OPTIMISTICC teams have a crucial role in writing and disseminating information about these programmes through the research teams’ websites and regular newsletters. Each Cancer Grand Challenges team is made up of researchers from multiple countries, and the OPTIMISTICC team has broadly matched their geographic spread with patient advocates from Canada, Spain, UK and US.