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OVIDcast by OVID Health explores current issues in the health and life sciences sector.
In this series, experts from patient groups provide their insights on how to strengthen partnerships between patient groups and industry for better healthcare outcomes.
[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, Rachael Stewart, OVID Health Deputy Head of Patient Partnerships, and Rachel Power Chief Executive of the Patients Association, discuss the importance of empowering patients to truly shape partnerships from their inception.
[00:00:42] Rachael Stewart: I know that you actually submitted two entries to OVID's Patient Partnership Index this year, one of which received the gold standard, which is obviously excellent news and congratulations. Did you want to say a little bit about those projects, what they are, and how they came about?
[00:00:59] Rachel Power: Yeah, fantastic. We were absolutely delighted to win the awards. So, we work with our corporate partners and we work with others who may commission us to do pieces of work. We'll only work with partners where we believe that there is a true willingness to engage and to work directly with patients to effect that change that we talk about.
I just wouldn't work with a partner if I didn't think that it, if I felt for one second there was a tokenistic aspect. Our goal with Pfizer was, was brilliant and this project was about AMR and they looked at working directly with patients to really personalise the risks it may pose and together developed those tools that allowed for that shared decision making to happen around antibiotics and the other project was funded by Novartis and what Novartis did was allowed us to undertake a piece of work on shared decision making from a clinician perspective, because we've done the barriers to shared decision making from a patient's perspective and actually in true partnership, we wanted to understand what the barriers were from a healthcare professionals perspective as well. So we undertook a survey with healthcare professionals to really understand so that we can kind of look at both barriers and see how we can move forward in the future with our vision around patient partnership, so we were delighted.
[00:02:25] Rachael Stewart: Great. What do you think makes a good partnership in terms of patient and life science companies working together? Do you think it's the same if it's a partnership between patients and healthcare professionals or patients and life science companies? Do you think they stand across those two types of partnerships?
[00:02:43] Rachel Power: You know, I think every company that is developing any type of service or drug or treatment for patients should have patients at the heart of that involvement and be starting with patients. Everything, regardless of where you are in the system, needs to start with patients. You know, we've worked with some partners who really, really genuinely value that voice within their transformation work and it's with regulators as well.
[00:03:10] Rachael Stewart: Can you expand on that a little bit?
[00:03:12] Rachel Power: So I think, you know, the patient partnership is with the health care system, but it's also with all of industry, but it's also with the regulators who are working within the health and care system, ensuring that it can be too easy to just listen to my voice, you know, often I'll be brought into a room saying, well, we think this is what patients will say, are thinking and I'm like, well, I don't know. I haven't asked patients that specific question, so I'm not going to sit here and tell you what I think patients say. But I think we're just going to make sure that we're always listening to a variety of voices and reaching out to make sure that we hear those voices that are not heard.
[00:03:48] Rachael Stewart: That's really interesting. So in terms of the regulators, do you think they are involved in partnerships at the moment, or that's an area that perhaps is being overlooked?
[00:03:57] Rachel Power: No, I think they are involved in partnership, I think that they're part of the process. Some do it better than others, I'm sure, but it is for all of us, everyone together that is involved in health and care from your development of the service, the drug, to discharging and into social care, the whole package of us all making sure that we really value the input of patients.
[00:04:25] Rachael Stewart: I'm sure you're approached all the time by industry partners because you have that direct line to patients. From your experience of those interactions with industry, what do you think industry are currently doing well, or are there things that perhaps you think it would be beneficial if they change their approach slightly?
[00:04:43] Rachel Power: Okay, there's a lot of questions in there. So the first one was, what do I think our partners are doing well? Well, the answer to that is they wouldn't be our partners if I didn't think they were doing it well. I think what they could do better is across the board as industry is I think that we should be bringing patients in when it's a blank sheet of paper when you're in the planning stage and that can be quite a scary thing to do, to bring in somebody when you haven't actually as the professional made a decision about what you want to do, but actually we argue this on a regular basis.
Get patients in, understand what they need, what their needs and wants, how they want to work with you, what they think will work, and that's where you start your design of services, and I suppose the other thing that I think industry need to think about is to really think about the diversity of the patients and the carers that they're engaging with.
So, inequalities will always exist, but we have a duty to make sure that we're always looking out the window and making sure we're very aware of what's happening in terms of inequality of access. We've just got to keep widening that access pool.
[00:05:59] Rachael Stewart: Do you have any specific tips on that, how to reach those hard to reach communities, or perhaps some examples of partnerships that you think have done that well?
[00:06:08] Rachel Power: I think the patient's association is always looking at ways to do that, and the way that we do it is reaching out, making sure that we're reaching out to smaller patient groups, making sure that we're looking at the needs, so if we're doing a focus group, we look at that focus group and we go, okay, so who are the people that might be affected by this? And we look at inequalities across the line. I think the way that you've got to do that is, is looking very specifically at what is the question we want to ask here? What are we trying to achieve by this? And then making sure that the engagement strategy is wide enough to make sure you're bringing in those new voices and actually there's something about, you know, supporting both the professional, paid individual, in being able to hand over that power in any meeting or focus group and there's something about the patient who's seeing that they're, they have the power and that they're going to be listened to and then there's something about when the industry finished pieces of work that they then think about how do they support patients post that. It's about remunerating patients and really, truly, you know, actively supporting them with remuneration as well. It's about thinking about where we hold a lot of the focus group work or the lot of work that you're doing. There's a lot about thinking about, you know, what is the time of day that you run your focus group because you know what, between all your engagement, between nine and five may not be good.
[00:07:36] Rachael Stewart: Thank you, that's really helpful and I think it shows the level of thought that needs to go into partnerships.
[00:07:41] Rachel Power: Absolutely. I see examples and I do get contacted by industry saying, oh, well, I know this person down the road and he said this will work and I'm like, that's not engaging with patients. They want to say that they've done patient involvement engagement, but actually they're not doing it and they don't see that there is a need for investment in doing it and doing it well.
I don't think there's any excuse for not doing it, and I think industry need to challenge themselves if they feel that just bringing in one or two patients at some stage through the process is engagement, because, you know, where we're looking is to get right up that continuum to the highest level of where it is genuine partnership between patients and professionals.
[00:08:25] Rachael Stewart: I think it shows, so in the partnership between The Patient's Association and Pfizer, so the one that was awarded gold in the Patient Partnership Index. I think it was the judges pulled out that co-creation element and said it seemed like a genuine co-creation partnership, so patients involved from the very beginning, so what you're doing is obviously working and it's creating a great example for other partnerships as well.
[00:08:49] Jack Fleming: Thank you for listening to this episode of OVIDcast. Next week, Rachel Gonzaga speaks to Victoria Clare about her experiences as chief executive of Ovacome.
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