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OVIDcast by OVID Health, a global healthcare communications consultancy, explores current issues in the health and life sciences sector.
In each series, we explore a new topic, speaking to prominent figures within the healthcare landscape.
[00:00:00] Jack Fleming: Hello and welcome to OVIDcast. Here at OVID Health we are committed to enabling and inspiring healthy lives through the power of communications. In this series we'll be exploring the essential role of partnerships between patient groups and the life sciences industry and asking how the sector can forge stronger partnerships which deliver better health care for patients.
In today's episode Rachel Gonzaga, head of Patient Partnerships at OVID Health and Mary Pavlou, President of the Fabry International Network and a trained nurse who lives with Fabry disease, discuss how to build effective partnerships in a way which isn't burdensome for patient groups.
[00:00:46] Rachel Gonzaga: Mary, hello and thank you again for joining us. In the last episode, you talked about transparency being a really key part of a successful partnership with industry. One conversation that we have a lot with our clients who work with us in patient advocacy is around measurement and how you measure the success of a project, what do you think is the best way to measure the success of a collaboration with industry?
[00:01:08] Mary Pavlou: I would say that during the years of COVID, we have, reevaluate all the structure of FIN and we rebrand the FIN and we rethink everything, and that question exactly came across as how we measure our success. But, not all projects can be measured, I mean, we have our expert meeting a few weeks ago. Of course, there are numbers to show the success, how many people attended, the evaluation forms completed, et cetera. But nobody says how many hours we've been working for that, towards that, and how many, you know, little thing has to be managed and organised in order for this to be in fruition.
So I'm open to, you know, new ways to measure our success, because I believe that's an instrument and, a tool to you know, pursue more of, the influence that we want and if you see overall a project at the end of the project, you don't characterise that as a failure, you know, because it's a step.
Maybe it wasn't on the right time, but maybe it wasn't on the right place or region, but you can reevaluate things. I see things as a circle, not as a straight line, let's say, and of course we want to measure things that can be measured, but not all things can be measured.
[00:02:43] Rachel Gonzaga: I think that's really interesting because it's such a hot topic because it does feel like it is, you know, it's not easy to measure the direct impact on patients sometimes. So that's really interesting to hear that you might potentially consider entering into a partnership where, you know, the project doesn't have like a quantitative measure at the end. It's more of a qualitative measure.
A lot of people listening to this podcast will be in the process of planning a partnership with a patient organisation, what advice would you give to those people who are right at the start of that journey and thinking about how they approach a patient organisation?
[00:03:20] Mary Pavlou: Be clear, friendly, give alternatives, be patient with time. Don't send a contract that you don't have enough time to review because we need time to review, I'm not a lawyer and to make an idea a reality is a big deal and we must congratulate both parts, you know, if you have the money, but you don't have the idea, nothing will happen, if you have the idea, but you don't have the money, nothing will happen. It's the combination, it's the working together that brings us the results. I want to say another thing for the other end, for the patient organisation as well. Be prepared, have policies, read your contracts from start to finish, from page one to 10, demand on lay language on the contracts.
[00:04:18] Rachel Gonzaga: Are there any other insights that you would want to see pharma asking for more often?
[00:04:23] Mary Pavlou: I mean, the joint collaboration with other industries, I am one human, I have one life and I am a patient as well, I don't have the time of the world to split. So having joined projects and, you know, joined, with other partners of the industry, on the level that would be great. The one that remains and the one that is more valuable are the ones that, are supported by all partners and all partners mean all the industry partners and all the patient association or patient representatives. For example, there is a need now for educational material for gene therapy. I don't believe that patients have fully understand what gene therapy means. What are the risks? What are the potential? That's what the community need, not all companies will say yes to a project like that, for example, but that's the true need right now and also we're neglecting some of the age profile, being young in 2023, having a chronic disease is so much different and we need to hear how to approach them and how to be more near to them to understand the needs of the young generation. So yeah, the projects are endless, I believe, yeah, if we sit down on a table with a good heart and transparency I believe we can do great things, I truly believe that.
[00:06:05] Rachel Gonzaga: Brilliant. I think that's a perfect sentence to end on actually. Thank you.
[00:06:09] Mary Pavlou: Thank you.
[00:06:10] Jack Fleming: Thank you for listening to this episode of OVIDcast. Join us again next week when Rachel Stewart, OVID Health Deputy Head of Patient Partnerships, speaks to John James, Chief Executive of the Sickle Cell Society and OVID Health Patient Partnership Index judge.
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