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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 today's episode, Rachel Gonzaga, OVID Health Head of Patient Partnerships, speaks to Clare Jacklin, Chief Executive of the National Rheumatoid Arthritis Society about the partnerships which have inspired her during her time at the charity and what can be learned from these successes.
[00:00:44] Rachel Gonzaga: Clare, hello again. Can you tell me about a partnership that has inspired you recently?
[00:00:48] Clare Jacklin: Well, I wish I could say it was one of my own partnerships with NRAS, but actually, I have really admired the work that NASS have done, who, you know, the National Axial Spondyloarthritis Society, at their Aspiring to Excellence program, which was made possible by funding and support from a number of industry partners and what really inspired me by that, it wasn't just something that was for 12 months and it's done and it's dusted and gone. It has built into the program real step change potential, supporting the clinicians and the healthcare professionals, helping them to aspire to excellence, which will benefit patients.
So it's not directly looking at working with patients, but working with the healthcare professionals and experts that are treating them, and I think... And the fact that it's a, is scalable and sustainable going forward. It's really something that I'm quite jealous of, and I've already seen such a difference that it's making within rheumatology.
[00:02:03] Rachel Gonzaga: Brilliant, and can you tell me about a partnership that you're particularly proud of from your own charity as well?
[00:02:09] Clare Jacklin: There's been numerous ones over the years that have had real impact and have resonated with our beneficiaries, the people that we serve, the people living with rheumatoid arthritis. One was some years ago, it was called Behind the Smile and it was a partnership that we did with Eli Lilly and that really helped patients to be open and honest with their healthcare professionals and not, you know, put on the brave face and because people with RA are incredibly stoic and the Behind the Smile campaign ran for about three years, I think and it was a variety of videos and it had huge traction. It had real, you know, it was very welcomed by the people we represent, and the other one was something that we started with Gilead and continued then with Galapagos was the We RA Priority. Nice little play on the words there. We RA Priority. And it was looking at very much on the lifestyle impact of living with a long term condition like RA in the workplace, with relationships, with how you dress, you know, the stuff that's important to people, and again this has been, we're in our fourth year of working on this and we are still planning into the future so I like it because it's sustainable and scalable and the actual resources that we've developed are being used on a daily basis. It's not some flashy report that was done and sits on a shelf. It's actually getting into the hands of patients and, you know, the feedback that we've got has been really positive about it.
[00:03:59] Rachel Gonzaga: It sounds like there's a few common threads there that make you particularly proud of those two projects, I guess. Addressing a genuine need from the community, the longevity and the ultimate impact that it's had and the fact that that's ongoing. Is there anything else that you would say helps you measure the success of a programme or a partnership?
[00:04:21] Clare Jacklin: Well, both of those particular projects that we've worked on, we were brought in right at the beginning. We had real influence in how it was designed, and we were equal partners working with the industry representatives, but also their agency, and it was a really productive and well thought through concept design and I felt that we were truly listened to and our input was valued.
[00:04:53] Rachel Gonzaga: Were there any challenges with those particular programs, anything you would do differently if you were to go back in time and do them again?
[00:05:01] Clare Jacklin: I don't think so. I think perhaps one... The more recent one actually using real patients in the video content was important and I think it came really across as being very authentic. In others where we've used actors, it was well done, but it took a lot more work, and I think sometimes we shouldn't shy away from showing the real... the real life experiences by using patients with lived experience.
[00:05:30] Rachel Gonzaga: You've been with your charity for a long time now and you must have seen a change in how you interact with companies and the sorts of partnerships that are created. What trends are you seeing in the partnership space?
[00:05:45] Clare Jacklin: Well, I've been at NRAS for 16 years, so I have seen a lot of changes over the time, and I think there is a desire, I think, within industry to genuinely work well with patient organisations and to try and simplify the whole contracting with, you know, when starting up partnerships, etc, and I think there is a true desire as well to ensure that patient organizations are adequately compensated for their time and there is a piece of work going on at the moment to look at that fair market value, you know, if you've got a chief exec coming into an advisory board compared to somebody with a patient with lived experience, is there a difference there? And I think that's a trend that I'm seeing patient organisations are having a bigger presence, if you like, with industry at various stakeholder meetings as well. We're not kept on the periphery, on the edges anymore, and I think the industry is beginning to see the value that we bring to, you know, NICE technology appraisals, et cetera, as well. I don't think there's anything that I would not like to see continue, all those things I want to see continuing.
[00:07:04] Rachel Gonzaga: Perfect, thank you. What advice would you give to people listening to this podcast who might be thinking about starting a partnership with a charity?
[00:07:11] Clare Jacklin: Well, I'll just reiterate, you know, don't go at the eleventh hour with the worked up idea. Involve them from the get go. We can really have a big influence on improving the outcomes. Be honest, be frank, and from a, you know, patient organisation point of view, be brave and say no sometimes too. It can sometimes feel like we want to follow the money because we need the money. We're all charitable organisations. But actually, you might end up doing more work than you need to.
[00:07:47] Rachel Gonzaga: Thinking back to my charity sector days, I know there was a little bit of caution around pharma partnerships and their involvement in the charity. How are partnerships with pharma perceived internally and by your supporters and how has this changed over time?
[00:08:03] Clare Jacklin: Absolutely, you know, there can be some people who may think that charities, patient organisations shouldn't work with pharma at all. But I think because we are very transparent, about how we work with industry and what sort of projects that we do, and we, you know, are very clear on our website and our annual reviews, and we declare that very much to our beneficiaries, to our members, our stakeholders and I think now they fully appreciate that without those partnerships, there would be a huge amount of work that we just could not do. We could not deliver some of our services, we couldn't deliver some of the great resources that have been developed over the years, and certainly, we wouldn't have the ability to raise the profile of our disease area, in our case rheumatoid arthritis, without the input and the expertise industry can bring that we don't have in house ourselves.
So it's a really valuable, it is a win win situation working with industry, and I think as long as you're transparent and clear, and make it very clear that the industry partners don't have undue influence on what we do, I think that's, it's all about being transparent.
[00:09:22] Rachel Gonzaga: Clare, it's been a pleasure speaking with you, thank you.
[00:09:26] Jack Fleming: Thank you for listening to OVIDcast. In our next episode, Rachel Stewart, Deputy Head of Patient Partnerships at OVID Health, and Rachel Power, Chief Executive of the Patients Association discuss systematic approaches to patient engagement.
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