Why should consumers be involved in creating interventions?
Consumers are the people using them. For example, if you are designing your dream home, you would be the best person to get it right. This is because you will be the person that will live there. You will know how functional, practical and possible certain parts are considering your lifestyle and budget. Just like you will be the best person to help, make sure it is as best it can be.
Involving patients will:
- Improve the design.
- Make the research better.
- Be more attractive to funding (because funders value consumer input!)
- Help researchers understand how to involve other consumers in the project or trial.
- Therefore, more people will benefit from the work because it is as best it can be.
How is this achieved?
There are some frameworks we can use to offer guidance. For example, the UK Medical Research Council’s (MRC) framework and RE-AIM framework.
The MRC framework offers guidance to researchers in coming up with ideas and carrying out research. It looks at the effectiveness and acceptability of the intervention or project through a consumer lens. You can read about the MRC Framework here.
The RE-AIM framework stands for Reach, Effectiveness, Adoption, Implementation, and Maintenance. It is a model for researchers and consumers to work together and think about the durabilty the project. For example:
- Reach: Who is the target group?
- Effectiveness: What do we want to achieve?
- Adoption: How many people will benefit? How will people use it?
- Implementation: Will people use it? Will it work the way it needs to?
- Maintenance: How does it fit into someone’s life?
You can read about the RE-AIM Framework here.
Let’s look at the M-FIT example:
The research team held a workshop with health professionals and consumers. It focused on exercise interventions to improve fatigue in patients receiving dialysis. The project engages consumers throughout, such as through the Consumer Advisory Group. This involvement makes it reachable to many people who want to use the program. It helps make sure it will be the best it can be.