Identifying your target audience
To get the most out of involving patients in your research it’s important to identify people relevant to your research. Think about what experiences and skills will add the most value to your project.
Identifying the personal experiences needed
The focus of your research and the questions you want to ask patients will help you figure out what personal experiences are beneficial. Personal experience could be:
- Having a personal diagnosis of cancer
- Being a carer for someone with cancer
- Length of time from diagnosis
- Cancer type
- Treatment type
Identifying personal experiences relevant to your research could look like:
- Your research is looking at side effects of chemotherapy in breast cancer patients. So, you may want to talk to women who have had breast cancer and had chemotherapy within the last 5 years.
- You’re looking at the acceptability of your trial protocol and the readability of your informed consent documents. So, you may want to talk to some people who have undergone a similar clinical trial in the past.
The personal experience of the people you involve may influence the involvement method you use. For example, patients who are undergoing treatment might not be able to attend a full day focus group. But they may be able to do a telephone interview or survey.
Identifying the skills and expertise needed
The method of involvement will help you think about what skills are important so that the people you involve can contribute effectively.
Identifying the right skills for your involvement method could look like:
- You're recruiting patient representatives for your steering group so would like to involve someone who has experience working as part of a group.
- You’re interested in what additional patient involvement could add value to your research. So, you may want to talk to patients with experience of patient involvement in research.
- You're writing a blog about your research to a lay audience. So, you may want to involve people who have no experience of working in research or science.
Making your involvement diverse and inclusive
Involving a diverse range of people can bring rich insights to your work. Look for where you can seek diverse views within the personal experiences and skills necessary for your research.
It can be tempting to always involve the same people who are well known to your research institute. Patients who get involved regularly can become great ‘patient experts’. This can be very valuable for some involvement opportunities, but not all. It’s important that you involve people with the experiences and skills most relevant to your research, to get the most out of the involvement. It’s important to use fair and transparent recruitment processes as per the INVOLVE National Standards.
To find out more about diversity and inclusion in patient involvement use the INVOLVE strategies for diversity and inclusion.