Subscribe
Share
Share
Embed
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 is joined by Clare Jacklin, Chief Executive of the National Rheumatoid Arthritis Society, to discuss her experiences of working in partnerships and where she would like to see partnerships focus in future.
[00:00:45] Rachel Gonzaga: Hello and welcome to OVID Health's patient partnership podcast, I'm Rachel Gonzaga, OVID's Head of Patient Partnerships. I'm asking a series of experts from patient groups for their views and insights on how partnerships between pharma and charities work best, and how they'll be forged in the future. Today, I'm joined by Clare Jacklin, the National Rheumatoid Arthritis Society's Chief Executive. Clare, thanks for joining today. Firstly, tell me about your charity.
[00:01:12] Clare Jacklin: Thank you very much, Rachel. So the National Rheumatoid Arthritis Society, or NRAS for short, is the only patient organisation in the UK that has a specific focus on rheumatoid arthritis and juvenile idiopathic arthritis as well, and we've been established for about 21 years and we work with a whole range of industry partners on various different projects over the years.
[00:01:38] Rachel Gonzaga: How do you work with pharma and other life sciences companies?
[00:01:42] Clare Jacklin: Well, it's a variety of things that we do, sometimes we act as consultants for pieces of work that they're doing internally, be it advisory boards, etc. Perhaps they want to get patients' perspective on how to develop their clinical trials or, you know, what is important to patients, so again we can facilitate that, other times we ask industry partners to support us in the work that we want to do. So there's various different ways. It might be something that we'd like to hold an event, or we may want to produce a resource or a video or a booklet, and we need funding for that, and we work alongside, sometimes we work together on that, depending on the topic and sometimes we ask for hands off funding.
[00:02:29] Rachel Gonzaga: Thinking specifically about the partnership working, where you are working hand in hand with a company, what do you think makes a great partnership?
[00:02:38] Clare Jacklin: Well, I think the most important thing is mutual respect for the value that each can bring to the project. That we're not just a tick box exercise. From years of experience of working with patients, we know the disease area and I think often we will bring a different perspective to what is important to patients, and I think as well, it's far better when a company comes to us with a blank page, you know, at the time where they're developing the concept of a project, rather than coming with a whole worked up idea and saying we're going to do whatever it is, and often we don't have much influence and it feels too much like a tick box exercise. So, getting us involved right from the early stages and really listening to our perspective and having that mutual respect is vitally important.
[00:03:39] Rachel Gonzaga: Claire, you mentioned that having respect for a charity partner is a really important part of having a great partnership. What does that actually look like?
[00:03:49] Clare Jacklin: I think it comes down to that genuinely listening and taking action on what the patient organisation is suggesting or bringing to the table. That it's just, as I said, not a tick box exercise, and then whatever is produced has taken none of that on board. I think that's, that, that makes the difference. It really does, and having that one person within an industry to deal with so that when we're not getting pulled in all different directions from different people in different departments, which has happened in the past. It doesn't happen as much now But that also shows respect for the patient organisation because we don't have an army of people in different departments that we can call on. There usually is only one person within the patient organisation dealing with all these different projects. So respect that by not having too many people asking the same questions.
[00:04:53] Rachel Gonzaga: I think some of the processes involved in working with a pharma company have been notoriously complicated. I think industry's worked really hard to try and simplify those processes. But how has the process side of things shaped how you interact with pharma companies?
[00:05:09] Clare Jacklin: I'm sure you will hear this from many patient organizations. the contracting, you know, I deal with all the pharma relations that we have at NRAS. So it's most years I will be talking to maybe 20 different pharma companies and they all have different ways of contracting with patient organisations. We are a small to medium organisation, we don't have a legal department to go through a 12 page contract for a thousand pounds of funding for a leaflet, you know, it just is that bureaucracy that I find a real challenge.
I have seen a concerted effort by a number of the companies to simplify that, which is really, really helpful for us, and I think having, as I said, that one person that you deal with helps as well, because you can go back to that person going, the contract you've sent through doesn't include X, Y, Z, and it needs to be, rather than having to go to numerous different people within the organisation. So, the simpler the better, and one company that we deal with, we have one overarching contract, but then we have appendices to that, for the different stages of the work, the actual, it's a focus group, it's a survey, it's a printed piece of work, it's a video, whatever and they're all, and that keeps it nice and simple too.
[00:06:47] Rachel Gonzaga: You mentioned companies sometimes come with a very different perspective on what's needed. Are there any common themes in that difference between your perspective and the company's perspective? Are there any insights that you wish they would ask for and just aren't asking for at the moment?
[00:07:04] Clare Jacklin: Yes, and this has happened probably more so in the past four or five years. Where there's more companies coming to us wanting to develop patient resources, and that's our job, you know, it's... Well, we've already got that, why would you be trying to do that? Surely, and it's different objectives or goals that they're trying to achieve.
I sometimes feel that what we would like industry partners to be doing is different to what they are hoping to work with us on. If I had a pound for every time a pharma company had said, we want to do a survey on the unmet needs for rheumatoid arthritis patients, I would be a very wealthy woman, and that's difficult because we're asking the same people the same questions over and over again, and the thing is, the data is already there about what the unmet need is. So we don't need to do it again, we just need to look at past data and do something about it. But often what's important to the individual living with a long term condition is not something that will necessarily be of interest to an industry partner, because it's not to do with medication, it's more to do with lifestyle. So that can be frustrating at times, definitely.
[00:08:30] Rachel Gonzaga: You've talked about lifestyle. Are there specific areas of lifestyle that you'd like to see more partnerships on or outside of lifestyle any other neglected areas that need partnership funding?
[00:08:42] Clare Jacklin: Well, I think we hear an awful lot, you know, there is the lifestyle things, that is the diet, is the fatigue that people with long term conditions like rheumatoid arthritis experience, but another key area is the inequality and inequity of care throughout the United Kingdom, and this is an area where the gap is getting bigger. It's a growing problem where we have different areas of the country where, just because of where you live, you might have access to, you know, all the medications that have been approved by NICE, and then in other areas. That is a major issue and it should be of great interest to industry partners because it means that their products are not necessarily being used as equally as they should be and I fully understand why it's difficult for industry to get involved in that because it will look like it's about promoting their product, which it's about helping us to level the playing field. So there's that big issue. But also, we have a very diverse population, and when it comes to people from different ethnicities getting involved in clinical trials, or even people from socially deprived areas, being involved in clinical trials, clinical trials have been designed in the same way for many, many years, and it does tend to get your, the usual suspects involved in, you know, white, middle class, educated, and that doesn't give you the true, you know, the true results of what real life patients will be facing. I suppose it all comes under the umbrella of inequity of care and inequality of care, which is something that we really have to focus on, I think, going forward.
[00:10:38] Rachel Gonzaga: Clare thank you very much for your time. Goodbye.
[00:10:41] Jack Fleming: Thank you for listening to OVIDcast next week, Rachel and Clare will discuss some of the partnerships which have inspired Clare and the challenges she has faced in delivering impactful partnership working. If you enjoyed the show, why not share it with a friend and subscribe so you never miss an episode.