Have you ever thought about how medical researchers determine what to study or how to conduct their trials? Well, here’s a little secret: they do not do it alone. Indeed, increasingly they’re turning to the true experts – patients and the public – for assistance. It’s part of the Patient and Public Involvement (PPI) approach to clinical trials, and it’s revolutionising medical research.
What’s PPI All About?
PPI is not merely inviting patients to the table; it’s ensuring their active engagement in every phase of the research journey. You can think of it as patients helping researchers to get the questions right and ensure the relevance of the research itself, rather than being studied.
After working on hundreds of trials over the past 20 years, I know PPI can be transformative. It’s more than just lip service — it’s an imperative for clinical research that resonates for the good of patients.
How Does PPI Help? Let Me Count the Ways!
- Improved Study Design: Patients have distinct perspectives that researchers might overlook. They can help ensure that trial protocols are practical and user-friendly.
- Better Recruitment: Patients who are involved in designing study materials often are better at explaining the trial to potential recruits. This can result in both more diverse and faster recruitment.
- Improved Ethics of the Trials: PPI ensures that trials are carried out in a manner that upholds the rights and quality of life of patients. It is a fundamental aspect of ethical research practices.
- More Relevant Outcomes: We can address which outcomes matter most to patients, informing more grounded, real-world research.
- Clearer Communication: When patients contribute, study materials and results can be articulated in ways that make more sense to everyone.
PPI in Action: Real Examples
You may be thinking, “What does PPI really look like in action?” Here are a few illustrative examples:
- Patient Advisory Boards: Groups of patients who provide continuous feedback and input during the trial process.
- Trial Design Input: Patients contributing to the high-level design and objectives of the study.
- Patient Outreach – Informed Consent: Improving consent forms to make them read better for patients.
- Result Dissemination: Patients assist in disseminating study results in ways accessible to and meaningful for the community.
Obstacles & Solution: The Journey Is Not Always Smooth
PPI does have its problems, however. Here are some of the most common ones I’ve come across, along with my recommendations on how to fix them.
- Language Barriers
- Obstacle: Patients often struggle to understand medical terminology.
- Solution: Offer researchers plain language training and develop glossaries of common terms.
- Time Commitments
- Obstacle: PPI work can be very time-consuming for patients.
- Solution: Provide multiple avenues for participation, such as virtual meetings or a variety of feedback methods.
- Training Needs
- Obstacle: Ensuring patients know how to engage.
- Solution: Establish extensive educational curriculums to train patient contributors on what they are being asked to do.
- Diversity in Representation
- Obstacle: Representing a broad range of voices
- Solution: Take steps to actively recruit participants from diverse communities and provide support, like transportation or childcare, to make it easier for more people to participate.
The Bottom Line
PPI is not a nice-to-have, but in fact an essential of contemporary clinical research. Patient and public involvement can help us design and run clinical trials which are more relevant, ethical, and effective. So, let’s really listen to patients, learn from what they told us, and partner in the process.
Keep in mind PPI is an evolving process. This does not stop the moment the trial starts; it continues throughout the research lifecycle. So, if you are a researcher, a healthcare professional, or a potential participant in a trial, think about how you can play a part in or promote PPI in clinical trials.
After all, when it comes to health research, we’re in this together. And together, we can make clinical trials work better for everybody.
Have you considered PPI work? We are looking for Patient Champions to joining our Patient Advisory Board – contact us if you want to be part of the journey.
