Final stages of patient involvement

After your patient involvement activity there are a few important things you need to do to ensure you and the people you involve get the most out of the involvement. You need to make sure the people you involved are feel valued. You need to share how you have/will use their insights and feedback. And you need to evaluate the patient involvement activity.

Keep them updated

Feeding back to the people you’ve involved about the impact they’ve made to your work will help keep them engaged and motivated. It also demonstrates that you value them and that their involvement wasn’t a tick box exercise.

An easy way to structure this is:

  1. Brief summary of the project
  2. The questions you asked the patients
  3. What the patients said
  4. What you’ve done with that

The level of impact or change that has happened as a result of the patient involvement will vary.

Sometimes discussing your projects with patients will give you the confidence to know you are on the right track. Sometimes you will be able to make some tangible changes to improve your project. At times you may decide to change direction. All this is great – remember to loop the patients in. If you choose not to take on some of their feedback, that’s also fine, just explain why.

Evaluating the patient involvement activity

It’s important to evaluate your patient involvement activities for a few different reasons:

  1. It helps you to know what worked well, and what you can do better in the future
  2. It helps you reflect on if the involvement activity or if you need to do some more insight gathering
  3. With the increased demand for patient involvement in research, you may be asked to demonstrate the impact the involvement had to your research in your progress reports

Asking for feedback shows that you respect and value the people you involved. It helps to keep them engaged. And it will help you understand what worked well and what you can improve on next time.

Cancer Research UK welcomes any feedback from the people we involve at any point. But we will also seek feedback at the end of our involvement activity. If the involvement activity is ongoing then we have regular touch points where we seek feedback. This feedback helps us plan for and improve future involvement activities.

Use this template to help you seek feedback from the people you involved.

Once you’ve have received feedback it’s is important to acknowledge it and act upon it. We recommend sharing a summary of the feedback along with what actions you and your team will take as a result. You may want to follow up with a phone call or a meeting to understand any of the issues and how you can address them.

In the planning stage, you thought about what you wanted to find out or achieve through involving people affected by cancer. Now that you’ve have gathered this insight it is important to reflect on if these aims have been met. Checking this may highlight where further patient involvement could add value.  For example:

  • You may have done a survey which has highlighted some key themes you want to delve deeper into. So, you might could run a focus group or telephone interviews to explore these themes.
  • You may have run a focus group but the demographic of people who attended was not very representative of your target population. So, you could run a survey to try and reach a wider population of people.

Patient involvement challenged us around some of the language we use and what patients’ expectations and hope are

- Professor Sir Michael Stratton – CRUK Grand Challenge Principal Investigator

More and more researchers are being asked to demonstrate the impact of involving patients, particularly if you received funding to do it. When we talk about the impact of patient involvement it is really about any positive, negative or unplanned effects the involvement has promoted.

Involvement doesn’t always have to lead to a change.  An impact could be that you moved forward without changing anything, but you were more confident it was the right approach.  Or it could be that the impact of the involvement was on motivating and bringing you and your team closer to the cause.

Without patient input, we would not have such a goal-oriented, effective and successful team

- Dr Jelle Wesseling – CRUK Grand Challenge Principal Investigator

Evaluations when your involvement activity is ongoing

It’s good practice to have regular review points for ongoing patient involvement activities (e.g. patient representatives or patient panels). This will help both you and the patients get the most from the involvement. It’s also an opportunity to update expectations and ways of working.

Seek feedback not only from the patients, but also from the researcher or team members. Tell everyone at the start that there will be regular review periods so they know what to expect. Everyone (patients and researchers) should be open to providing and receiving constructive feedback.

It is important to give everyone the opportunity to reflect on:

  • what’s working well
  • what are the challenges
  • what could be better or improved

You can use a variety of methods to do this review. You can use surveys, face to face, telephone interviews, interactive workshops etc. It can be useful to start with a survey and use the responses to inform a group discussion or follow up conversations.