Choosing your patient involvement method
There are a variety of methods you can use to involve patients in shaping your work. The method you choose will depend on:
- How much influence you want them to have
- If you want qualitative or quantitative insights
- How much time and capacity you have
- Your target audience
- The sample size required
- Your budget
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. This is a really important step for meaningful patient involvement.
Budgeting for your patient involvement
There are associated costs that need to be considered and budgeted for when planning your patient involvement. This includes covering patient expenses, optional honorarium for eligible involvement, venue hire, facilitator costs, food and more. You should be clear about what you’re able to cover before you recruit patients to your involvement activity.
Surveys
A set of questions designed to gather opinions and perspectives from many people to inform and shape your research project. This should not be confused with conducting a survey as part of your research. They are time efficient and it’s rare to offer payment for this.
Advantages:
- Large sample
- Time efficient
- Responses can be analysed with quantitative methods
- Honest insights
Disadvantages:
- Can't clarify questions or answers
- Can’t gather in depth insights
- Limited on the type and number of questions you should ask
Focus groups
An event where you bring a group of people together to take part in well planned and facilitated discussions on a topic. You can use different activities and facilitation techniques to gather insights. Focus groups generally run over a half or full day. Expenses and an optional honorarium are paid to patients.
Advantages:
- Good for complex issues
- In-depth discussion
- Group can bounce ideas off each other
- Many techniques for gathering insights
Disadvantages:
- People can be influenced by others’ opinions
- Time consuming
- Higher expenses
- Not always accessible to some groups
Patient advisory panels
A group of patients that provide feedback and new perspectives over a longer period. They receive training and an induction. Expenses and an optional honorarium are paid to patients.
Advantages:
- Can build rapport
- Range of skills and experiences
- Expertise increases with time
Disadvantages:
- Require a lot of support
- Friendships can change group dynamic
- Patients can become experts (so are no longer 'lay')
- Higher expenses
Interviews
An in-depth conversation that allows you to gather rich information. Interviews can be conducted face to face or over the phone and can be structured, semi-structured or informal. Expenses (if face to face) and an optional payment is provided to patients.
Advantages:
- Good for complex issues
- Can clarify questions or answers
- Rich qualitative information
- Honest insights
Disadvantages:
- Small sample size
- Time consuming
Patient representatives
Patients that sit on an existing project team or steering group alongside other experts. Ideally there should be at least 2 patient representatives. This provides another patient perspective and peer support. Patients will receive training and an induction. Expenses and an optional honorarium are paid to patients at an equal rate to other steering group members.
Advantages:
- Expertise increases with time
- Keeps research focused on patient benefit
- Act as critical friends
- Ongoing feedback and discussion throughout your research project
Disadvantages:
- Patients can become experts (so are no longer 'lay')
- Can require a lot of support
- Limited number of perspectives
- Higher expenses
Comparing the patient involvement methods
Download this information so you can easily compare the different methods and make the right choice for you.