Patient Engagement: The Industry Perspective
Updated: Jun 10
In this episode of If Medicines Could Talk I talk with Liz Clark, Vice President of Medical Affairs and Patient Engagement at Norgine in the UK.
Our talk covers a wide range of subjects such as when to work with a patient group and patient advocate, how culture impacts compliance, breaking the biggest myths surrounding patient engagement and why a little 11-year-old girl wrote to the Norgine CEO.
There are 15 separate episodes combined into one video, each one is time coded.
If Medicines Could Talk is a best practice vlog published on Linkedin where Nick Hicks speaks with other experts in patient advocacy and engagement about best practice and the insights they have gained.
To be notified of when our next interview is published sign up to our email list here https://mailchi.mp/de0aaad99353/imct
Watch the full interview above or read the transcript below
For more information on patient advocacy and engagement at the time of COVID-19 please contact Nick Hicks by e-mail nick(at)commutateuronline.com or schedule an initial conversation by clicking here https://calendly.com/commutateur/patient-outreach-engagement-discussion
Patient Engagement; The Industry Perspective
NH: Hi this is Nick Hicks and welcome to a new series of If Medicines Could Talk. And today I’m delighted to be speaking with Liz Clark who is the Vice President of Medical Affairs and Patient Engagement at Norgine in the UK.
LC: Thanks Nick
NH: Liz, briefly, can you explain what Norgine does?
Norgine’s a privately owned company and we’re a European specialist company. We work across multiple specialist therapy areas. And these include gastroenterology, heptology, cancer and supportive care. In 2019 our net product sales were around 420 million. And this allows us to reinvest for medicines in the future, in all of those areas and any other areas where we think we can commercialise something and it will make a difference to patients’ lives. I think one of the hallmarks of Norgine is that we are an agile and adaptable infrastructure, so we're used to partnering. We work with many different partners and actually this has been quite important in thinking of the patient engagement work where we engage with patients as stakeholders. So I think our partnering heritage is important there. We like to have the strength of the one region approach whilst embracing and understanding the different regional challenges, cultures, characteristics, and healthcare systems across Europe. So it’s a really fantastic company to work for.
NH Liz please explain how patient engagement works at Norgine?
LC Sure. I mean, my primary role is Vice President of Medical Affairs and the patient engagement piece was something that I felt it was really important that we started to do as a company. But actually I'm doing that as a separate enterprise if you like, separate to the medical affairs role, because I think it's really important that patient engagement is for everybody across the organization and not just led by one department. So I set up a separate community, which is totally focused on patient engagement and all aspects of patient engagement and lodging.
NH please describe how Norgine defines patient engagement?
LC Patient engagement. I find it really difficult finding the right words. It's actually about a mindset or a way of thinking whereby we have the patient in mind in everything that we do. So it's not so much the definition, it's more of a way of thinking and a way of being.
NH: At Norgine, with patient engagement does it go across the lifecycle or is it a more early stage or are you more close to launch or are you post launch products?
LC (03:30): It's everywhere. Well, because we've set it up in a way that it is in our minds, it's a mindset, it's a way of thinking. And we've invited and encouraged people from all parts of the organization to take part in our patient engagement activities, it means that it should permeate every aspect of what we do. So it's not confined to one particular space. Even in the manufacturing space. So, we'd have patients who have visited our manufacturing facilities, for example, and that's really, really important for people working in those facilities to actually understand the impact that their contribution makes to patients.
NH can you explain your mythbusters programme? (04:28):
LC: We held one workshop on this. But it was something that I now wish that I had done a lot earlier, because what it revealed was that people were carrying with them a lot of preconceptions about what they could and couldn't do, and what patients wanted, or I didn't want. So a key part of those workshops was actually co-creating them with two expert patients. So Trishna Bharadia and Helena Barinda came along and joined us in, in shaping the workshops and then they run sessions in the workshops. And then we, over the course of a couple of days, we set about busting a few myths. And in the end I think we had 27 odd separate myths, but they clustered around a number of different topics, if you like.
NH What were these Patient engagement myths busted (05:32):
LC: So perhaps one of them was that we’re heavily constrained in terms of what we can do. The thing about that was that actually frequently people had thought of constraints without really thinking through whether they were constraints or not, whether they were actually just ways of believing that something wasn't possible when in fact it is.
NH: So what are the three biggest myths you busted?
LC: Well, probably the three that it came down to was that patient engagement should be a separate department. That was the first one. The second one was that patients actually understand the constraints that we have around patient engagement. And that engaging with patient organizations is exactly the same as engaging with individual patients. And most of the myths that we talked about clustered in some way around one of those. For me, it's about the difference between having an interface with an organization and an interface with an individual because as human beings we relate to other people as individuals.
LC For us, our experience was that as we started to talk to individual patients as patients, we gained a much better insight into the issues they had, the questions they had, the things they wanted to know of us. Whereas when you meet with an organization, you actually meet with a representative of that organisation. And it doesn't, to me, have the same depth of meaning that actually talking to an individual patient does.
NH when to use patient groups of individual advocates? (07:39)
LC. It's not an either or, but it's, as you say, it's about understanding what it is that you're trying to achieve and then how you might best work with other people to achieve that. But as I say that, I realize that it's also about, very much about the listening, because if we don't first listen to understand, then we can do all sorts of well-meaning initiatives that actually don't deliver what's wanted.
And although there are some organizations that are very helpful in doing social listening and providing the experienced patients, it still doesn't have that rawness of one person's individual experience. So probably at the start, it's about listening to individual patients as much as that’s possible then considering what they need. And that's often when it's necessary to start to think about how to go about delivering that. And some of those things are totally under our control. And some of them are things that we need to do in co-creation both with individual patients and with patient organizations. So across any particular piece of work, there will be different players at different times.
NH How would you define a patient friendly SOP? (09:14)
LC: So I think we need to take a step back from the concept of compliance here. And think about what is doing the right thing. Doing the right thing is about something that will be useful, will contribute, and won’t mislead individuals. It's all about authentic relationships which build trust. So if we use that as a starting place, we can then frame that if you like with some of the more detailed code of practice elements that help us to keep in that place. But I think if we start with compliance, it actually stops us thinking about what the right thing is.
NH How does Norgine approach compliance? (10:28)
LC: For Norgine, we've written a policy, which provides, it talks about our intentions and what we aspire to do, but it doesn't talk about the specifics of how to do everything. Because if we're talking about people in different areas, in different parts of the company, each one of those would need to do things in different ways. And that structure therefore becomes very rigid and it constrains people. And actually what we want to do is to liberate people to do the right thing. So yes, we have a policy. It says things like patients should not be out of pocket from participating in events where they come and support us or contribute to the things that we do. But we've really tried not to over define how we go about doing those things. So we have a policy.
NH: A few things that immediately jump out for me there is internal flexibility and individual collective responsibility for doing the right thing. It’s a culture thing.
LC: Yeah. It's a culture. Absolutely. And I think we're lucky being a privately owned company, where we have strong relationships between people in different departments. And when I set up the group, I invited anybody that wanted to come along to join rather than saying we had to have representatives from different groups. So consequently, we have people from pretty much all areas of the company in the group, including two of our legal colleagues.
NH How does the compliance function work internally? (12:21)
LC: We have people from pretty much all areas of the company in the group, including two of our legal colleagues. And they have been members of the group as members of the community, rather than people who have been brought in to provide legal advice. So when we've wanted to create contracts and agreements with patients, we've been able to work very closely with them to do that, with a view to rightsizing them.
And what we've done here is that the ones that we have developed and used we've often had feedback or questions from the patients who have signed up and have worked with us. So we try to make them a bit better each time. And we try to share the templates. But anybody working in a group who has a project that wants to draw up a letter of agreement or some sort of specific contract that relates to what we're actually doing, can very easily pick up a legal opinion, get a legal opinion from a member of the group, who they know as a member of that community, rather than somebody distantly in legal. And that makes a real difference too. We actually have to create something with meaning that people want to be part of. Because if we say to people, you need to be a part of this, then we might have somebody sitting around a table, but their commitment to it is not the same as if they feel that this is really important and this really matters. So one of the outstanding things about our group is, apart from maybe one or two places where we felt that we wanted to encourage people to step forward, pretty much everybody involved has volunteered to be part of this group alongside their day job.
NH How does a company get started in Patient Engagement? What re the tips to get started ?(14:24)
LC: I think you can tackle that at two levels. First of all, as a company, you need to understand who can say yes to this and who can bless the project if you like. And that's going to depend on your corporate structure and your size, the way in which you do things in your company. For me, it was relatively easy to get started at Norgine. I had the idea, I discussed it with people that were interested and possibly a few people that weren't interested. There weren’t many of them luckily. And then I pitched the idea to our executive team and that gained me my first two volunteers and sponsors in terms of our chief development and medical officer who's my boss, and also Peter Stein who's our CEO. And they’ve backed the project ever since. So I think the corporate piece is important. And with more or less structure, depending on how your company works.
I think we were different in doing something that was intentionally not overstructured and that's led to perhaps a longer path because it takes people time to get to understand a new environment. And environment where there may not be so many rules, an environment where there isn't that SOP that you mentioned to lean on.
NH How does an individual get started in Patient Engagement? (16:15)
LC: Then the other aspect of it is how individuals get started. That's something that everybody who does this work has to start somewhere. And at our myth-busting session, we talked a lot about how to get started. One of the things that I found useful was that I found details of a couple of expert patients that I could simply call up and say, look, we're trying to do this, what would you advise? So one of those was Richard Stevens who came along and talked with myself and a number of other people at Norgine and gave us some ideas about what other people were doing and what we could do.
Going to meetings and networking externally because there’s a really big community in this space that shares in a collaborative way above company level that is a very good community to be part of. And there are some excellent meetings that have patient engagement at their heart, and these are really good opportunities to hear what other people are doing and to get ideas. But even if you know all of that stuff, you still have to start some way yourself. And that's often by picking up the phone to somebody you don't know and explaining what you want to do and how you think they might be able to help. So one of the concerns that some of teams have had, have been about not wanting to be promotional, because obviously we shouldn't be promoting prescription medicines to patients.
And one of the easy ways to get started in that space is to speak with patient experts who are not patient experts in your therapy space. So for example, Helena who came along and helped us with our workshop, her experience is in the asthma space, and she's also a EUPATI fellow. So she was able to bring in a lot of experience and a totally authentic patient perspective, but without people being concerned that they might do or say the wrong thing. And I think people who've then related to patients in that space, it's then a lot easier to talk to people in your own therapy space without worrying that you might say the wrong thing.
NH What are the biggest obstacles to Patient Engagement? (19:01)
LC: I was very lucky as I had widespread corporate support. I think probably my biggest obstacle was that we needed to get a certain amount of momentum going and we needed to be able to communicate and promote that community internally. Perhaps to start with that I overswung a little bit in terms of that community being self-feeding if you like, self-perpetuating, outside of our Harefield offices and outside of medical. So one of the things that we really needed to very intentionally was to think about how we could bring people from all parts of the organization into the group and how we could make sure that we had representation and engagement from the whole of Norgine and not just isolated parts of it. And so that was where we actually brought a lot of people together to meet each other and that has then gone on and strengthened the community. So when we do communicate remotely, we now have more of a sense of knowing each other than perhaps we might have done when we were all working remotely and hadn’t met in person.
NH Please describe the cultural considerations to Patient Engagement (20:32)
LC: I think there are several points that are worth reflecting on that you make there. The first is understanding culture. And actually this is perhaps another area where my coaching background has been helpful. In starting to understand the elements of culture and how they impact on how we behave differently and in different countries. And so patient engagement is no different in that respect. What is important is that we take the concept, we take the fact that it's a mindset and a way of thinking. It's about thinking about patients as stakeholders and thinking about them in everything that we do and interweaving that with the cultures that we're working in. So there's no intention here to say, everybody must do it the same way as we doing it in any one country. But if everybody embeds that as a mindset and an important part of what they do every day, then we will find that what we do fit the culture in each of the countries that we do it.
NH: How is Patient Engagement incorporated in corporate strategy (22:04):
LC: So you only need to integrate patient insights with the corporate strategy, if those insights are outside your way of working and what you're doing. So we come back to saying that if within each of the different brand teams, we have people who are part of the patient engagement community, part of the voice of the patient community, they will naturally become part of their thinking. And that will naturally then flow into what we do at a brand level. And different people have got involved in the different teams in different ways. So for example, one of our brand leads recently, she actually did the myth-busting workshop and went away with ideas about what she could do with her brand, for her brand that came not just from other people, Norgine people around the table, but from our expert patients who were able to say what they have done with different companies that might be relevant in her space.
In others, maybe the brand leader is not involved and maybe one of the medics in the team is involved and perhaps have become rather irritating at meetings going, what about the patient view? What are we doing with patients here? I think that people have forgotten that all of this takes time, it's not going to happen overnight. But my feeling that this is a much more robust way of integrating the mindset of thinking about patients as stakeholders in what we do than in creating some parallel pathway, if you like of, “Oh, and one of your strategies must be about patients.”
NH What’s the most important factor in a successful initiative? (24:11):
LC: I would say engagement . Engagement with people. And those people are people internally and also patients. Sometimes those categories cross. So for example, within our patient engagement community, we have a lady who is an expert patient for Bloodwise. And so she brings her perspective as an expert patient in a completely different arena, but can apply that to understanding pharma and understanding Norgine as a company. And so actually, if we listen we have internal experts as well, but it is about that engagement and understanding of what different people can bring to the table and not pre- judging categories of saying, “Well, Jane's in IT. I'm not sure what IT is going to bring to the table”, but actually being open to how people can contribute.
NH Where do you see PE in three years? (25:35):
LC I think the patient voice will become more and more heard. What we're seeing is a breaking down of a lot of boundaries. I've spoken about this quite a lot, and it's built on some of the ideas of a chap called Julian Stodd, who has talked about digital technology, enabling something called the social age. This is about saying that we are moving from a world of the structure hierarchical power into a space whereby we're creating social power across communities that do not have the same boundaries. So social media is a very good example of this space where yes, companies will have a corporate space and as individuals within companies, we need to consider the extent to which we may be representing our company or our company position in terms of what we do. But equally it's creating a space where patients and health professionals can mix more freely than they had previously done where their opinions and ideas can be shared. Where patients can access knowledge that wasn't available. And I think there will be more and more work to do with helping people to make sense of the information that is available to them to make decisions that work for them as individuals.
NH How will Covid-19 affect Patient Engagement? (27:24):
LC So I think the whole of our knowledge economy is shifting and therefore the way that patients engage as stakeholders and what in co-creation and collaboration with pharma and pharma works in co-collaboration patients is the way that that's going to go. And I believe that the COVID-19 situation is going to accelerate that massively. My sense is that it will accelerate what is already there and it has the potential to amplify what's there, whether that be good or bad in many, many respects. And in the longer term, I think it will create new possibilities. I think the disruption that is happening around us is shaking up a lot of our beliefs about what's important to us. And in that we are all in some respects patients, but we are, we're all people, and patients are people dealing with different challenges. So for me, it's actually about amplifying those things. I think it will mean that we are much more digitally connected. That will open up the possibility of conversations perhaps happening more easily than they would previously have happened. So I think to me, that's an opportunity part of it.
NH What is Emmie’s letter to the Norgine CEO about ?(29:24):
LC: So this was Emmie, and Emmie wrote to say that she had taken one of our products, and that it had been very helpful to her. And she wrote to say, thank you. And it was just so wonderful. It's always great. We get quite a lot of thank you letters. So this was great. And my boss came rushing down the office waving this letter and said “This is wonderful”. We read it and talked about it and I said “Look, why don't we actually invite her to come and see how a product is made?”. So we then said, “Do you want to come and see how it's made?” Which she did. So she and her mother came to our factory to see how it was manufactured. And we felt that this was something that we should capture. The people on the manufacturing side were fantastic. We got some protective clothing and so on, so she was able to actually say things, quite close and we recorded it. And to me, the really important thing about this was that somebody had actually said, thank you. And that meant such a lot to so many people. And so obviously with Emmie and her mother's permission we put that on the corporate website and it's been lovely to share. It's inspirational when somebody says thank you, and actually our corporate ethos is because patients inspire us. And a lot of that was, was about Emmi and her visit to Norgine