Planning your patient involvement

Thoroughly planning your patient involvement will help you deliver a successful, purposeful and value-adding experience for you and the people you involve.

Explore the patient involvement process to make sure you have considered everything you need to when planning. As you explore the toolkit use this worksheet to help you plan your patient involvement.

Identifying your aims and objectives

The first step is to define your aims and objectives. Being clear on your aims will help when you’re communicating your goals to the patients you involve. It will also help you when you’re applying for funding, evaluating your involvement and reporting on its impact.

Thinking about these questions can help you to define your aims and objectives for your patient involvement activity:

  1. What problem are you trying to solve?
  2. How can insight from patients help you solve this problem? 
  3. What questions do you need to ask them to gather this insight? 

Think about evaluation early

Once you have defined your aims and objectives, it is important to start thinking about how you will measure if you have successfully achieved these. Evaluation is also important to improve your patient involvement and to demonstrate it's impact. Read about evaluating your patient involvement here.

Patient involvement throughout your research

The earlier you involve patients in your research the more impactful it will be. 

Work with patients here to ensure you pursue what matters most to patients. Involving patients early can help you identify any potential ethical implications or sensitivities. 

Involving patients at this stage could look like: 

  • Using a survey or/and focus group to identify what the most important research topics are to patients
  • Patients working with you on an ongoing basis to keep patient outcomes at the centre of your research 
  • Patients helping you refine your research question and articulate the potential patient benefit

Involving patients at this stage can be beneficial across all types of research.

Cancer Research UK worked with patients to set the priorities for the most ambitious cancer research grant in the world. Patients have played a huge role in the Grand Challenge from the start. Find out more.  

Involve patients here to help strengthen the quality of your research, ensure your research is acceptable and improve study recruitment and retention.

Involving patients at this stage could look like:

  • Patients reviewing trial protocol to identify preventable barriers to recruitment and retention
  • Patients reviewing your patient facing materials (like your informed consent documents) to ensure these are easy to read
  • Patients improving the communication of your research aims and patient benefit in your funding application - particularly if you are required to submit a lay summary

Involving patients at this stage can be beneficial across all types of research.

Cancer Research UK Centre for Drug Development regularly works with patients which has led to greater recruitment and retention to their clinical trials. Learn more.

Involve patients here to support participants and enhance study analysis.

In some cases, people affected by cancer can support with conducting a study and interpreting data. Involving patients at this stage could look like:

  • Patients conducting interviews of participants to reduce researcher bias - this also helps put participants at ease allowing them to talk more freely
  • Patients helping make sense of qualitative, experiential information - they can help explain trends in data set that someone without a lived experience of cancer could not
  • Sending out patient experience surveys to understand the experience of trial participants - this will allow you to make improvements to your study or identify ways to improve in the future

It is less relevant to involve patients at this stage for basic and lab-based research. 

Involve patients here to increase public interest and engagement in your research.

The earlier you involve patients in your research the more excited they’ll be to share your research findings.

Involving patients at this stage could look like:

  • Patients helping you identify the key messages of your research and summarising them in a lay friendly and engaging way
  • Patients tailoring communication to public audiences
  • Patients feeding back results to those who participated in your research
  • Patients developing and delivering public engagement and outreach plans - they can help make your research accessible and bring it to groups and forums you may not be aware of

Involving patients at this stage can be beneficial across all types of research.

Writing for a lay audience

Writing in plain English or ‘lay’ is important so you can communicate your work to all audiences. Plain English helps your audience understand your message exactly as you meant it. This is helpful not only when communicating to patients but also to other professionals.

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