Dear Pharma, Your Patient Isn’t A KPI with Mark Duman

What happens when we stop calling people “subjects” and start inviting them to help build the solutions they need? We sit down with pharmacist and patient engagement leader Mark Duman to unpack how language, literacy, and lived experience can transform clinical trials, medtech, and digital health from the ground up. Mark introduces his three Cs—co-creation, choice, and coaching—and shows how each one moves care from doing to people toward working with and learning from them.

We dig into the hidden pitfalls of relying solely on patient advocacy groups, why representation matters, and how to reach the millions who never join a mailing list but live with the biggest burdens. Mark shares a practical bridge: “staff as patients,” an internal, compliant way for organisations to hear real stories and test assumptions. From there, we explore informed consent that genuinely informs, outcomes data people can understand, and the right to know who is treating you and how good they are—without drowning in jargon.

The conversation then zooms out to health literacy and data literacy as core citizenship skills. Wearables, home testing, and portals promise insight, but only if people can interpret trends, risk, and uncertainty. We talk about building inclusive paths for both digital-first and low-tech preferences, making space for community-driven solutions. Parents in rare diseases show what’s possible when lived experience meets scientific rigour: they convene experts, shape protocols, and even spark new therapies. That is the “meeting of experts” mindset—clinical knowledge and daily life experience on equal footing.

Finally, we take on prevention and incentives. Can industry support prevention without fearing cannibalisation? Some already do, and the smarter lens treats trust and long-term health impact as strategic assets. We close with concrete steps any team can take: map patient journeys, test language for clarity, co-design eConsent, reduce protocol burden, compensate fairly, and measure how patient input changes recruitment and retention. Subscribe, share with a colleague who designs studies or products, and leave a review telling us one phrase you’ll stop using and what you’ll say instead.

Transformation in Trials is a podcast investigating how we can change life sciences to get treatment to patients faster. 

Getting treatment to patients faster requires well-functioning organizations. How do we do that? Ivanna Rosendal has written a book called Maneuvering Monday, about how a group of people try to make their organization better. You are certain to have a good laugh at their expense. And potentially get inspired how you can help make your company better.

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Transcript

SPEAKER_01 0:31

Welcome to another episode of Transformation in Trials. Today we're going to focus on the topic of how does one actually focus on the patients first when it comes to clinical trials, but also life sciences in general. And today in the studio with me I have Mark Duman. Mark, very happy to have you here.

SPEAKER_00 0:46

I'm delighted to be here. Thank you for the opportunity.

Mark’s Background And Three Cs

SPEAKER_01 0:48

Mark, could you tell our listeners a little bit more about what you're currently up to?

SPEAKER_00 0:52

Yeah, so I'm a pharmacist by profession, so I've always had an interest in medicines. Probably, to be honest, more the medicines taking than the drug making side, but I've been pulled, not quite screaming and kicking, into that sort of RD side over the last decade, much more so. And so I look at the entire asset life cycle or product or indeed service lifecycle, and we support life science companies. And by that I mean pharma, medtech, and increasingly digital health to think about how do we use patient insight to co-create products and services, and that includes obviously medicines and medical devices and digital therapeutics. And where we have got those products on the market, how do we use that patient insight to make things even better? And satisfaction is a marketing tool, it's not necessarily something that helps people develop better products. We do a lot of work around informed consent and choice. How do we produce really good quality information for patients to feel truly informed and to make informed choices? And lastly, how do we move from a caregiving system to coaching? So it's not just about treatment, it's also about prevention, self-care, and self-management. So we talk about the three C's of patient engagement: co-creation, choice, and coaching.

Language As A Barrier To Participation

SPEAKER_01 2:07

Very cool. And just to set the stage for our listeners, what does like the typical patient intricacy actually look like when it comes to clinical trials today?

SPEAKER_00 2:16

Well, I think first and foremost we have to get away from the language. Language is a really interesting barrier. We talk about clinical trials, and the vast majority of people that you speak to on the street will say to you, what's a clinical trial? But I think we're very good at seeing the world as we are and not seeing the world as it is. So I think first and foremost, and it's a little bit of a cliche, but we need to get in the shoes, not even of patients, but of citizens and of people, and understand their health literacy or their clinical trials literacy. Because I think we start by saying, Hi, would you like to take part in a clinical trial? And it's like, no. If we said something like, Hi, would you like to get involved in making a potentially life-saving medicine or a life-saving medical product or a digital health product that helps live a better, longer life? People might say, Oh yeah, what's that about? We may then need to get into the detail of, well, that involves a clinical trial, if indeed it does, because we are moving into real-world evidence and perhaps hopefully redefining what a trial is and what evidence is. But I think we need to start right at the beginning with what is our objective? What are we trying to do here? And what language should we use that's acceptable and understandable and engaging, more marketing driven, dare I say, than seeing things from our own perspective.

Defining Patient Advocacy And Roles

SPEAKER_01 3:35

And I would like you to define another term for me. There's this term of patient advocacy. What does that mean?

SPEAKER_00 3:41

So this is interesting. So advocating for patients. I think there's multiple levels, and it's funny, I've been in this world now for 30 years, and I don't think I've ever been asked to define advocacy. So I'm going to do this off the cuff. So I think from the advocacy, there's obviously there Novo Nordisk did some interesting stuff, the disease expert experience program, and it's now changed, I believe, to the patient voices group. I've been working on and off with Novo Nordisk for a few years. Then their categorization is as follows. Number one is you have an advocate who will run a group but may not necessarily have the condition. You will have a patient who advocates and has the condition and has the ability to both express their own lived experience but potentially garner the lived experience of others to advocate for themselves and for others. And then you have a sort of an advocate who really struggles perhaps, or not struggles, but is the most of us is you know, what is my condition? What's it about? Leave me alone, I don't want to have it, how do I manage it, etc., etc. So I think there's personal advocacy. They also then have a fourth category, which is interesting, as a big company with however many thousands of employees, they also then have staff as patients, which is interesting. And this is something I often talk to organizations who are quite new to the idea of patient engagement and encourage them, because there are compliance issues, there are conceptual issues, why would we talk to a patient? We're not allowed to talk to a patient, which is wrong. We can, but we just have to go through various regulatory and legal approaches to do so. But when you have staff as patients, they're employees, and there's a much, you know, you can start your patient engagement work by often looking within the organization and starting having conversations with them. I was working with a sales and marketing team of a medical device company only yesterday. 120 sales and marketing people in the room, and four people came up to me at the end of my presentation where I mentioned staff as patients and said, actually, we've got long-term conditions, we've never thought of bringing that patient perspective to work. That's really interesting, you know. And some people want to bring it to work and are happy to share it. Others don't want that label, understandably, and would rather be the professional, not the professional plus the patient. So that's a very personal decision for people to make.

SPEAKER_01 5:49

Interesting. So it seems like from the pharma side, we're trying to uh reach towards the patients with the patient's entricity or patient engagement. And then the patient organizations or patients themselves are trying to advocate for their needs. But do these two ever meet, or are they kind of like sailing past each other in the night?

Representation Gaps In Patient Groups

SPEAKER_00 6:07

I think fundamentally they they they could, should, and need to meet. And I think number one is be careful when you say you're working with patients, that you're not only working with patient advocacy groups. It's different in rare disease, but I think as a pharma company or a life sciences company more broadly, when you approach a patient advocacy group, I think it's important to say who's your membership. There's a particular group I work with here in the UK, and I sit on one of their boards. There's nearly six million people with the condition in the UK. About four and a half million know they have the condition, and just under a hundred thousand are members of the patient advocacy group. So there's a big gap between that hundred thousand membership and the 4.5 million who know, or four and a half million or so, or whatever it is, 4.3 I think it is. And so that's a big gap. And then not only is there a gap potentially in quantity, there may also be a gap in quality, in that I think a lot of the patients who become members of patient groups, and I don't know because I haven't done the analysis, but are often patients who are already more engaged. And ultimately, what you want to be doing many of the times is that the four million who aren't members are perhaps the people you need to speak to most. So I think there is an issue about representation and being very honest and open, first of all, who are we talking to, and importantly, who are we not talking to? And then to talk about, well, what's your shared objective? We're trying to get more people to take a medicine, we're wanting people to contribute to health technology assessment, we're wanting more patients and citizens to get involved in trials. I think start with a shared objective and then co-create that solution. That to me is far better than coming with a solution and saying, what do you think of this? Better to do that than nothing, but I think it's much better to sit down and co-create that with the patients. And one of the things we've talked about over the years is that the medical model does to patients. The charitable model, the advocacy model does for patients. We're all very much embracing doing this with patients, but I actually think we need to go further. And I think we need to learn from patients, both in terms of it's our data and real-world evidence, but also allowing us to innovate. And there's a wonderful website in Portugal, and I keep telling them to set up an ambassador program because I talk about them every week, and I'm saying, can I be an ambassador? You don't need to pay me any money. But I just think conceptually what you're doing is great. It's patienthyphen-innovation.com, and they collect stories and case studies of patients who are innovating. And that to me really shows the idea that you know we we don't just need to be reviewers or co-creators, we can actually be creators. It's it's we can determine and in some cases fix the needs that we have. And I think I see a lot of that now increasingly with parents who have children with rare disease. They, as parents, are becoming drug stroke medicines developers. That's inspiring.

SPEAKER_01 9:24

That is inspiring, but I would be curious what would the conditions for that be? For them to be able to uh co-create, how do they engage the rigorous medicine scientists in helping them with uh creating the drugs that their children need?

From Doing For To Learning From Patients

SPEAKER_00 9:36

As always, when put on the spot, I can't remember, but there's there's somebody who I engage with, he had a condition and he's he actually happened to be a medic, which obviously helps, and he set up his own foundation and said, right, this is the condition I have. I'm now going to the the genetic experts and going out to the scientific community and to pharma to help find some cures. And I think back to your point about what is patient engagement, what is patient centricity, it's a meeting of experts. And even where you're not a doctor, even where you're a patient or a parent with lived experience, that lived experience is really important. And that's a level of expertise. I often say to people, yes, I'm a pharmacist, so I do understand a little bit more about anatomy and biology, but I'm still a lay person, but I do know and can describe, even not, even if not in biological terms, what's going on with my system and my body. And people say, Well, that doesn't make you an expert. I said, Well, it makes an expert in my own experience and an expert in my own body. And one of the reasons that in medicine, veterinary medicine and pediatric medicine are so difficult is you get very little from the pet or the animal, or indeed from the child. And so you really need to be an incredibly good diagnostician. If you're not in those areas, please realize that all the questions you're asking of your patient is them sharing a level of expertise and insight. And sometimes that goes unrecognized.

SPEAKER_01 10:52

But it sounds like there's also a shift of recognizing that parents in this case, but also patients themselves, may have understanding that it is difficult to measure from a science perspective. There is something that you as a patient know that perhaps we might not even know to measure.

Parents As Innovators And Meeting Of Experts

SPEAKER_00 11:08

So two responses to that. One is is medicine and medicines and healthcare a science or an art? And I think it's both. I think it's both. And we could wax very, you know, philosophically and lyrically, but I think it's both. You know, and I've often heard people say, Oh, would you like a surgeon who was, you know, very accurate but couldn't communicate, or would you like someone who would communicate who might make a slip of the knife? And I would say I want both. And I'm not sure it's not right to ask that. I was supposed to go to for cataract surgery about eight weeks ago, and they could not tell me who was going to do the surgery. And I said, and they and I were like, I asked that for in writing. I didn't want a phone call with a call center. I wanted to see something in writing. And uh, a couple of weeks out they sent me the name of the surgeon and they sent me a link to a whole bunch of an outcomes database for cataract surgery. Number one, I couldn't find his name on it, and number two, and then there was a couple of names similar to his, so I looked up the outcomes data for those two or three surgeons with similar names, and I couldn't understand the data. So again, back to health literacy or back to that point of publish and be damned, it's not good enough to give, you know, that I have to demand the information, and then when it's given to me, it's not in a format I understand. You know, the person who's repelling my boiler or my car or the insurance salesman are all accredited. Surely I have a right to ask if the surgeon or the doctor has done this before, and if they have, are they any good at it? And it seems to be that even asking that question into this whole patient empowerment movement has seen to be a little bit rebellious. And I'm like, don't think so. I think uh, you know, if if you were a surgeon, you'd find your surgeon friend who was really good at it. Although I was having a coffee this morning with a dentist who was telling me that he did uh his own filling 30 years ago, and only only recently has it now come out. And I was like, okay, so I think you're an outlier.

SPEAKER_01 12:53

But in general, like this this whole health literacy subject, I'm interested in it because we are now able to collect more data about ourselves using wearables, also just having more access to our own patient records. But are we equipped to actually understand what all of this data means? And also potentially how does it cross over if we get our blood samples and we have some data about when are we out of breath when walking up the stairs? Can we reasonably correlate those two? And what would it take to actually equip it, like citizens in broader terms, to be able to manage their own health?

Health Literacy, Outcomes Data, And Rights

SPEAKER_00 13:25

Yeah, and I think that's the second point I was going to come to about that real-world evidence, real world data, you know, not just our patients potentially seen as innovators, but ultimately it's it's our data, and as we move towards data wearables, I think that becomes you know an increasingly important currency in healthcare. And in the same way, we we train, hopefully, you know, and educate our children and adolescents, depends on your country, to understand the value of currency, to understand how to do business transactions, how to write a letter. I'm not sure my any of my kids know how to write a letter anymore, but I do remember. In fact, I think, and I'm not gonna say which of my kids, because it would embarrass them, and I'll keep it gender-free so that we're not, but but I remember them writing a letter, and we took it down to the post office, and they stuck the stamp on the wrong side. And I just thought, wow, you know, equally that same child, you know, highly articulate and intelligent, we went to a petrol station to fill up with petrol, and they didn't know what to do.

SPEAKER_01 14:23

Yeah.

SPEAKER_00 14:23

And I was like, and again, as a parent, I was I I walked into I said, You fill it up and I'll go in and pay. And nothing was happening. So I came out and said, What's wrong? And and they nearly said gender, and they said they said, I don't know what to do. And I had to ask this man to help me because you'd gone into the shop. So I was like, I was giving into trouble for not parenting properly. Why am I saying all these stories? Because I think health literacy needs to be embedded into schools and into citizenship. We need to understand risk and benefits, and and we're very bad at risk communication. People would not do national lotteries if they knew statistics. And you know, let's be honest, we don't we don't understand risk communication. But that doesn't mean that we shouldn't we we shouldn't work harder in schools and as parents to really start to educate both ourselves but also our our our our colleagues, our guardians, our our our kids to really how to navigate the healthcare system. I think it needs to become part of citizenship. And especially, I mean, I'm I'm lucky to have a national health service in the UK where I phone a number and I and I, you know, God forbid something happened and it was uh it was an acute condition, I'd be looked after. I look at some of the communication through colleagues and on LinkedIn in the US and think not only do you have the complication and the emotional turmoil of dealing with the condition or conditions, you have to navigate this incredibly and increasingly complex insurance system. I and I, you know, I'm off to America on on Monday and I'm gonna have a couple of conversations with people in the healthcare system because I don't I'm I'm actually worried from outside that system that actually the more complicated navigation around health literacy is the insurance and the access issues as opposed to necessarily treatments and and all that sort of choice ourselves. So I think I think they've got a double whammy in in health insurance systems that you have to navigate both the care and the access to the care.

SPEAKER_01 16:13

Yeah. I was stationed in the US for a year uh and had a a health uh issue myself and got to experience like the wonderful complexity of the US healthcare system. And again, I the actual treatment that I received was great. Nothing uh to complain about uh for that. But getting to the point to actually being able to receive treatment took uh I I believe three weeks until I actually uh got to get the treatment. And it and it was not it it was a routine issue, but still just like figuring out well how to do it from here. Whereas in Denmark, well, because it is a unified healthcare system, same as us. You just go to either your GP or the hospital and then you're looked after.

Wearables, Data Literacy, And Citizenship

SPEAKER_00 16:53

Correct. Correct. And I and I lived in Israel for two years, and I remember my fiance, now obviously wife, you know, took took really not well, and we had to get an ambulance on the Sabbath, and we don't do monetary transactions on the Sabbath, but the first thing they said when we got in the ambulance was, How are you going to pay? Yeah. And I was like, I said, Well, I'll give you a credit card, but I'm not carrying it today. And they were like, Well, we can't treat you. So I then had to go upstairs because it was life-threatening, and I'm allowed, you know, you're allowed to to inverticoma, you know, do transactions or whatever it needs to be to save life. Broadly speaking, let's not get into Jewish law on that on this. But broadly, you know, but I know and I just thought, golly, I'm so not used to that. You know, it's it's it's not something that that I've ever come across in 57 years in the NHS, you know. I've never had somebody say, How are you gonna pay?

SPEAKER_01 17:40

Yeah, so well let's hope it stays that way, because having to deal with disease is difficult enough.

SPEAKER_00 17:45

Correct, correct.

SPEAKER_01 17:47

So coming back to the technology part of things, we have the opportunity to monitor our own health in more and more uh different ways. How can we build solutions that actually help patients in monitoring their own health rather than making things even more complicated?

Global Systems And Navigation Burden

SPEAKER_00 18:03

I'd go back to my first C. Start, ask them. Don't don't build it and hope it works. And this is true whether you're building a product for managers or any product, go and speak to people. Yes, use your design expertise. You know, there's a balance between, and I don't think Henry Ford ever said this, but you know, everybody likes to quote Henry Ford who said, if I'd asked people what they wanted, they would have said a faster horse, not a car. So sometimes as user design and human, you know, we don't know what we don't know. That's where the design and the expertise comes in. But can you please combine that with user experience and human factor studies and really getting to the core of user needs? And yes, you can bring that ingenuity in and that design expertise, but I think it needs to be a combination, not one or other. And I would build, back to your point about wearables and this, that, and this thing, I would be building data and digital literacy as well as health literacy into the fundamental building blocks of what makes a inverted comm a good, responsible citizen. But also taking into account people whose life choices say, I don't want to be digitally literate, or I saw a piece of work, we did some work 20 years ago in Scotland with the sort of the the traveller community and access to personal health records, and we gave them a paper record in a waterproof, sealable bag type thing, because you know they didn't they didn't want to have need the need to have that sort of connectivity into the healthcare system. And some people for philosophical reasons, for religious reasons, or whatever, I mean, we are moving from analog to digital, and sometimes you will be carried with that and need to be carried with with that, but I think there is something about trying to make sure we bring everybody with us, and it goes back to Nelson Mandela and education, education, education, you know, and and and putting health, lifestyle, well-being in front of that word education. And also responsibility. You know, I I I sit here being recorded by you, and again, thank you for the opportunity as a patient, in addition to being a former clinician and a and a sort of consultant in patient engagement, but I may not need to have the condition that I have if I'd had a better relationship with food as I was growing up. So there's also something about where does that prevention come in and what responsibility do we have as patients, as citizens, as parents, to really think about prevention because we talk about it, but we all get paid for illness, not for health.

SPEAKER_01 20:27

That is true. I've I've been fortunate enough to record a couple of episodes that will be airing in this same season as you, talking about uh prevention and potentially how could we incentivize pharmaceutical companies to also kind of drag in the direction of prevention, even though it may potentially inhibit sales.

SPEAKER_00 20:44

Well, I was asked this question yesterday, which is Is pharma really interested in prevention if it will cannibalize its market? And I think the answer is I I I once asked a chief exec in a certain not chief exec, uh a C level person in a big, big company that she'll always remain nameless. And she said, um, we'll get you anyway. And I was like, what? She said, Well, you know, you have progressive diseases or you'll stay well from that perspective, but you'll get cancer. So, you know, I thought it was a you know, you'll you'll get you'll get something. So I thought, okay, it may not be your company that treats it because you've moved into prevention. And one of the companies we've already mentioned, you know, I believe now has a prevention unit. But again, I think that's because as an organization, they're more of a foundation that, you know, and and more societal impact led than than pipeline and profit-led and shareholder led. So again, it's uh it's an interesting conundrum as to whether you'd cannibalize your markets or whether we'll get you anyway, or whether it's the right thing to do. It's a it's an interesting debate, and I'm definitely not a health economist, nor a shareholder.

SPEAKER_01 21:42

Well, and then for for building solutions but also just designing good clinical trials, you've argued a couple of times that we need to actually speak to the patients and co-create having patients being the innovators. Like from a practical standpoint, can you talk me through how could that actually happen? Because a lot of pharmaceuticals' companies, like, we don't even know where to start.

Build Solutions With Patients, Not For Them

SPEAKER_00 22:02

Yeah, well, I think I think it's it's with regard to clinical trials, and we've touched on some of the issues already, but I think it's about talking to patients, talking to caregivers as well, because they're absolutely key in this, and talking to people, because I think it's also not about, you know, often we want healthy volunteers and we want to approach it so it's not just patients. I think a good place to start, given the caveat we've mentioned about representation, both in terms of type and volume of people, is patient groups. So here in the UK, we have the Association of Medical Research Charities. So again, you have particular charities who are dedicated to research. Most, if not all, of them are looking at issues around diversity and broader reach, etc. etc. But I think again, there's something back to if we have a responsibility to try to prevent disease, to self care and to self manage, do we also have a responsibility to feedback on our experiences of care? And that could include trials. And I think maybe if we begin to move away from terminology like clinical trials and research and being begin to call it feedback or or innovation and and use sort of broader inverticum as less scientific and more acceptable and perhaps more ph philosophically driven driven ideas, maybe we'll get more people interested in it. But I think for me it's listen. Stop talking, he says on a podcast, and listen. You know, we have two ears and one mouth and uh people have heard me say this many times but I think it's a hint as to what makes a successful trialist or a parent or any person is is you know try to try to listen twice as much as you talk. I've not been very good at that today so apologies.

SPEAKER_01 23:36

Well no worries. Mark how did you get into this space in the in the first place? How how did you get to where you are?

Prevention, Incentives, And Market Tension

SPEAKER_00 23:42

So I qualified in pharmacy in Aberdeen in the north of Scotland back in 1990 and sitting slightly hung over in a prize giving was awarded the then Myro Dow Prize for Pharmacy practice which has become a discipline and it was really about the sort of person in medicines taking and that's really been the theme that has driven me. So I've been very fortunate had a wonderful career working in the NHS developing technologies with and for patients the King's Fund, the BBC, telecoms, traditional Chinese medicine. And then 20 years ago I thought ooh what about consulting and I did some work for AstraZeneca at the time and I also worked for Tunstall which is a social care alarm provider. So I'd seen both the sort of health and social care medicines and technology and that's been the themes that have followed me through the last 20 plus years of running MD healthcare. So it's first and foremost where's the patient? How can we use digital as an enabler and how can we really get innovation to scale? Because at the moment we're very good at invention, we're not very good at adoption.

SPEAKER_01 24:43

I I completely agree. Well as we start rounding off this episode I always ask my guests the same thing and that is if I were to give you the transformation trials magic wand that can change one thing in the life sciences industry. What would you wish to change?

SPEAKER_00 24:57

The language what we talked about at the beginning I think start to talk about find out what's relevant to society and to individuals and to parents and patients when it comes to medicines, devices and digital health and talk the language that they want to hear not the language you want to transmit.

SPEAKER_01 25:16

That's uh that's an excellent wish we we can spend a whole different episode talking about how do we actually make that happen.

SPEAKER_00 25:22

Delighted to do it.

SPEAKER_01 25:23

Well Mark if my listeners would like to learn more about you or have further questions about some of the ideas that you have shared where where can they find you?

SPEAKER_00 25:31

At LinkedIn I think it's either M Duman or Mark Duman MRF Mess. There's a little smiling face of me send me a message say hello. I'm embarrassed by my website I can give you an email address and you can put that at the bottom of the of the podcast if that works. So yeah either LinkedIn or an email I'm not very good on social media I'm 57 so that's my excuse.

SPEAKER_01 25:50

Excellent but I need to get more digitally literate my daughter keeps telling me well digitally literate but at least uh you bring some good health literacy. Thank you.

SPEAKER_00 25:59

We're trying we're trying well thank you so much for joining me today Mark a pleasure and as I said very much appreciate the opportunity and yeah let's let's make things better.