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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 healthcare for patients. In this episode, Rachel Gonzaga, OVID Health Head of Patient Partnerships, speaks to Victoria Clare, Chief Executive of Ovacome, about her experiences building partnerships.
[00:00:39] Rachel Gonzaga: Victoria, thanks for joining us today. Let's start with you telling us about your charity.
[00:00:44] Victoria Clare: Ovacome is the National Ovarian Cancer Support Charity, and we really do focus on support. So we provide support and information to anybody affected by the disease and importantly to us, because of the hereditary risk related to about 25 percent of ovarian cancer patients, we also support family members, friends, you know, relatives, but also the clinical community to make sure that, you know, whatever resources they're producing, or trials, or research, or anything, are inclusive of patient views.
[00:01:19] Rachel Gonzaga: Can you tell me a bit about how you work with pharma companies and other life sciences companies?
[00:01:24] Victoria Clare: So our constitution as a charity, doesn't allow us to accept sponsorship per se, so we either apply for restricted grants to undertake specific pieces of work, or donations that are unrestricted, but support us in our work, or we work under a contractual basis whereby we will negotiate with individual companies and look at how a piece of work may meet the needs of our community.
So we support around 18,000 people every year. So we are very, very closely linked to, and sit within our community of people affected by ovarian cancer and so it means that actually we are able to represent the patient voice, able to amplify the patient voice to pharmaceutical companies and in that contractual piece of work, whereby a company may come to us and say, can you look through our patient information, for example, you know, that's a really good opportunity to ensure that, you know, at that level the patient's views, that they are going to be able to understand that leaflet that they're given. On another level, it might be a large scale campaign, something like Give Her Time, which we might kind of run with other charities in partnership and, you know, and I think we reached 56 million people through that campaign to really just highlight ovarian cancer and the needs of people with ovarian cancer, but what we do expect pharma companies to do is negotiate with us because it has to meet the needs of our community. We wouldn't consider working with a company that came to us and said, you know, look, this is what we need, we want a case study, can you give us this? Cause that's not going to meet the needs of anybody within our community. So you know, it needs to be a two way dialogue so that we're all really clear about what it is we're trying to achieve and how it meets our needs and how it meets our industry partners' needs.
[00:03:16] Rachel Gonzaga: Absolutely, that's really clear. You've mentioned already one campaign that you're particularly proud of, can you tell us about one partnership that you think worked really well? And specifically, what was it about the way the partnership was created and run that made it so successful?
[00:03:32] Victoria Clare: So, I mean, I guess a good practice example for us is the ongoing relationship that we have with GSK. We've built a relationship where they understand that we are the experts in what we do, they trust our judgment and they trust that we really are embedded in that community and if they come with a set of assumptions and we challenge those assumptions, they will listen and we can negotiate and we can talk through it and we trust that they are going to give us the information that we need to be able to best serve our community and we also trust that they're going to help us through that process, and that they're not going to make it onerous because, you know, there's a lot of form filling and kind of bureaucracy, perhaps, at their end, and they don't impose that on us.
Over the last five years, we've come to a point where now we are in a position, you know, both organisations, both teams trust each other. They've supported some of our health inequalities work and they've really trusted us when we've said, you know, look, this may seem counterintuitive, but when we're working with harder, you know, underrepresented groups, we have to do this this way and it might sound strange to you, but our learning has been this, you know, so I suppose in a way it's that kind of with an industry partner, it's about actually having those, perhaps sometimes difficult conversations, perhaps sometimes honest conversations, both parties being able to challenge each other and say that's not going to work for us, let's be clear about this, you know, where can we work together, where can't we work together, let's be clear about that, so that we're not wasting each other's time, and they're not kind of putting time and money and effort into something where they're not gonna see that, you know, kind of the outcomes or they're not going to see, you know, what they need to see or the focus of within their strategic aims, you know.
[00:05:15] Rachel Gonzaga: You mentioned innovative ways of working and innovation a couple of times there. Can you give me one example of a way that you delivered a part of that project that you hadn't anticipated being part of the plan and something that was quite surprising that ended up being successful?
[00:05:29] Victoria Clare: Yeah, absolutely. I mean, I think so some of our health inequalities work has been really key to us. You know, one of the things that we've received support from GSK on is not just financial, but also kind of information relating to, you know, kind of health inequalities and I think that's enabled us to do work where we've really been able to embed ourselves at community level. So they helped us develop a, or part funded, a series of training opportunities. or educational opportunities that we deliver to HCPs working in gynae oncology and what we've done is we've co produced videos and information and training resources with our members, with our service users from underrepresented groups and we've gone out and done the work and we've said, okay, so when we're talking about health inequalities, here are the groups that we know are underrepresented, kind of statistically, this is what research says and then we've been able to go and look at, actually what focus groups within our community tell us what their lived experience is and then with the help of GSK, because we'd already done that work, they part funded us to be able to do videos so that actually we were able to embed lived experience in our training for HCPs, so that it's really brought it to life, but for us to have a wider impact, what we've needed to do is incorporate the patient voice, that real lived experience into our training of HCPs, and be flexible to ensure that they are able to access that training, and then work to co produce solutions with members of our community, so that we don't just say, you know, these are the issues that people are facing. We say, these are the issues, here's the research, here's the evidence base, here's the lived experience, and this is what we can all do better. That support from GSK has enabled us to be innovative, but also because they also requested that training and that information, they've asked us questions, as professionals, that have helped us to reflect on, you know, kind of why are we saying some of these things and how can we change some of our messaging? Because if it's not clear to them, it won't be clear to other HCPs, you know, who are actually working directly with patients.
[00:07:44] Rachel Gonzaga: How are these sorts of partnerships with pharma perceived internally and by your supporters and do you think that's changing over time?
[00:07:53] Victoria Clare: Yeah, I think it is, well, I know it is changing over time, actually. I mean, I think it helps that at Ovacome we are very clear about how and why we work with pharma companies. I've had conversations with some of our supporters and our beneficiaries where they have felt uncomfortable initially about some of the partnerships that we've had and when I've been able to explain that actually it's really important for us and for them, for us to build those industry partnerships and the reason being that actually it's not just about the resources, it's the opportunity to influence policy. It's the opportunity to bring, new treatments, you know, to a patient community, I take on board that some people have concerns, but also, you know what? Every sector is working for the best of patients, right? And it's not acceptable for charities to just sit, sort of slightly aloof, believing that it's only us that are doing things for the good of patients, you know, that's a deeply, desperately arrogant way of kind of viewing our interventions and the way that we work. If we can build strong, trusting, long term partnerships with pharmaceutical companies and strong, long term relationships with NHS trusts and with policy makers, then actually patients benefit, right? That's just a no brainer. It's like a virtuous circle, and in order to achieve that virtuous circle, we have to be realistic and get off our high horses and actually acknowledge that everybody has something to bring to the table.
[00:09:31] Jack Fleming: Thank you for listening to OVIDcast. Join us again next week when Rachel and Victoria will explore the importance of trust and respect in partnerships. If you enjoyed the show, why not share it with a friend and subscribe so you never miss an episode.