Are EUPATI and IMI useful models for patient engagement?
Updated: May 3, 2019
This is the final video in the 4-part series with European Health Care Policy Consultant Tamsin Rose on patient engagement in R and D.
EUPATI and IMI are big projects with a long time frame; helping target patient groups become involved and stay engaged need to be viewed as part of a long term engagement strategy.
Text version of Interview
Nick Hicks: You've got EUPATI and you've got the IMI initiatives, which are European; you've spent a lot of your time in Brussels working in the commission. How do you think that patients are currently working within these two very large initiatives, because I hear different things?
Tamsin Rose: Okay. I think both of these that you mentioned, the IMI with all of its various projects and initiatives that's running for patients and EUPATI are both attempts to create some structured process to create a framework to allow patients to be able to engage, so they're not exploited, not overused, so that there are some ethical guidelines that are set up. EUPATI is excellent at providing skill sets to people, but they are never going to be able to replace the ongoing work done by patient organizations to develop the understanding of their members, the deep roots, if you like.
Tamsin Rose: The EUPATI and the IMI are adding fertilizer to the little green shoots that are coming up from patient groups saying, "We want to be involved and show us to the table. We want to be part of the decision making." Well, the fertilizer is thrown on and they do grow up but they also need to have the roots. You have to be able to have the earth to grow in. You have to have patient networks, information tools, the network capacity to be able to be really flourish and thrive.
Tamsin Rose: I don't know if there's a template for success because of course, each protocol is going to be different, each guideline because each disease area is different. However, bear in mind that all of the things you spoke about, protocol development, recruitment and retention take time and people are in patient groups because they want things to get better for their condition. They want very quick results. They want to get better referrals into specialists. They want faster diagnostics. What we're talking about is you're asking them to engage in a long-term activity that's going to require time commitment, learning a whole new set of terminology and language. It's going to require often sitting in a room with some very well-qualified, very senior clinicians and researchers, who all speak a language they don't understand and to be able to feel empowered to speak and not feel overwhelmed.
Nick Hicks: And to be able also to have behind them different organizations, different other patients who they can call on to reinforce their message, check, is there experience the same as others. So all of these things need to be in place before they can be part of recruitment or retention.
Tamsin Rose: Does it go to be meaningful, is it just a token patient sitting at the end of a twenty-person table? That's the real quality question we need to ask. Are patients there just to listen, and a tick on the funding box? Or are they being invested in that relationship and given the support or mentor. A clinician who is not on the board can be a person they can ask specific questions to so they don't feel overexposed in a big group. You have to put thought into enabling them to really take part.