What are the biggest challenges to widespread adoption of patient engagement (PE)? How can these be addressed?
The first challenge is logistical; people have the perception that time constraints prevent them from embracing patient engagement initiatives. This can be addressed by starting earlier in the process. For example, researchers could get feedback from people with Parkinson’s Disease (PD) at the protocol concept stage or when thinking about therapeutic targets. We need to demonstrate how spending time on PE upfront saves time in the end.
The other issue is that the benefits of patient engagement in research are not fully appreciated. To address this, we need quantitative metrics that show that PE works – it helps develop better end-points and accelerated recruitment to clinical trials.
What are the Parkinson’s Foundation key PE initiatives?
The Parkinson’s Foundation works to make life better for people with PD. We have three main pillars – improving care through centres of excellence; funding basic research to help improve understanding of the brain; and educating and empowering the community. PE fits under the latter pillar where we have initiatives such as the Parkinson’s Advocates in Research (PAIR) program.
How does the PAIR initiative improve research?
Our network of more than 300 people with PD and their care partners benefit from a three-day training program where experts teach them about clinical trials, informed consent, analysing research results, and how to represent their communities. We developed this initiative based on models in the HIV and breast cancer community, such as Project LEAD, and are now seen as being innovators in this field.
A key goal is to ensure that there are meaningful endpoints and secondary endpoints in trials. To give an example, it’s important to know whether reducing ‘off times’ [where symptoms re-emerge between medication dosages] in PD patients for four hours would be seen as a meaningful change in quality of life for people living with the condition. Perhaps it is, or perhaps eight hours should be the goal. If you don’t engage with patients, you cannot know.
The Parkinson’s Foundation has studied attitudes to PE in Parkinson’s research in the UK and US. What were the main findings?
When asked which aspects of your project were most impacted by working with people affected by PD, researchers in academia and industry across regions felt that patient engagement made the research more relevant. Study sponsors in the US and the UK both said they expect an advocacy organisation to connect sponsors with people with PD, facilitate collaborations and provide guidance on best practices in patient engagement in research.
However, there were differences between countries. For example, UK researchers said patient involvement validated the research question and improved communication, while US researchers reported patients improved study design and helped recruitment.
How has working with PFMD helped reach your PE goals?
The collaboration has provided us with new and different models for PE that we can build into our program. It has been inspirational to be in the same room as others from the global PE community.
What is the value of having a manual to inspire PE initiatives?
The manual gives people a concrete place to start. For researchers who want to do PE but are not sure how to start, it helps them think about how to do it.
You recently presented the PFMD guidance document at a major conference. What feedback did you receive?
Attendees were interested in the model – but it was new to many of them. At least one was keen to try it out. I think it was a new and exciting concept, and the robust approach was appreciated.
What is your message to companies, funding agencies, patient groups and other stakeholders who have not yet embraced PE?
There is wealth of experience, knowledge and ideas in the patient community that are moving research forward more efficiently and effectively.
Patient engagement takes practice, like any other skill. It may not work perfectly the first time, but don’t give up. Engage patients early and often in the process – waiting until a study is struggling to recruit is often too late. There are organisations like PFMD and the Parkinson’s Foundation that are here to help.
P.S. Do you believe patient engagement can change the face of the healthcare system? If the answer is yes, than you can also contribute to this cultural change. Click here to show your commitment and become part of the movement.