What a Nurse and Patient Advocate Wants Medical Affairs to Know About Engaging Patients

Garth Sundem  00:00

Garth, welcome to this episode of the Medical Affairs Professional Society podcast series, Elevate. I’m your host. Garth Sundem, Communications Director at MAPS. And today we’re speaking with nurse educator and patient advocate Kate Davies. So Kate historically Medical Affairs teams, we usually work like through HCPs to benefit patients, but we’re trying to learn how to reach patients more directly, and you know how to do that. What do you wish Medical Affairs teams knew about engaging with patients?

Kate Davies  00:37

That’s a big question.

Garth Sundem  00:40

Welcome to our open ended conversation about patient engagement.

Kate Davies  00:45

Thank you for inviting me to speak on your podcast. I think it’s really difficult to know. I guess it’s different, different from country to country, and also depending on the kind of medications that we’re talking about and that different illnesses or syndromes or whatever people have certainly, though, in my experience, I think there’s been a distinct lack in some kind of link between pharma and patient support and patient advocacy groups. Now I think, I think these groups tend to be mostly run by either patients themselves or, or, you know, parents of patients or, or, you know, somebody like who’s got some experience in in that condition. And there’s never really any farmer input, but there’s always questions, or on these groups, like in chat forums or on Twitter or x or whatever you call it, about, why can’t they make these tablets five milligrams instead of 10 milligrams? What? What difference does it make to them and and why can’t there be an injectable form of this? Why all of this? There’s lots of questions, which we as nurses and other healthcare professionals will think, Well, yeah, why can’t they or why, you know, why aren’t they speaking to the right people? My experience, for example, is looking after children and babies with adrenal insufficiency, and for years, we’ve had to give these children their medication, which is, they have to have life saving cortisol, hydrocortisone on board, and they have to take tablets throughout the day. But because things like clinical trials and ethics and all that kind of things difficult in children. You don’t tend to get much medication formulations done for children. So we’ve had this bog standard 10 milligram tablet of hydrocortisone, which you know, you and I as a big grown up. Can you know, neck that and swallow that, and that’s your dose for the morning. But for someone who’s a four kilo baby,

Garth Sundem  03:02

but and so they have these informational needs. They ask, why can’t we, why can’t we have a different formulary and Medical Affairs? I think would like to answer that informational need. And so we’ve got a disconnect. There is, yeah, let, let’s say, for the purpose of this conversation, that there are no regulatory and compliance barriers to reaching out to directly answer that informational need. You know, how do Medical Affairs teams find these patients who need this information, and how do they provide it, and what’s the best way to do it? Oh, exactly,

Kate Davies  03:44

that’s That’s the million dollar question, really, isn’t it, but it is liaising with healthcare professionals, and ultimately, they have to use their patient groups to contact and direct any information to them. So whether or not it’s with Medical Affairs personnel reaching out at conferences where they have their stands, and healthcare professionals are presenting their research, and you know, they go around the stands and let’s see this product or whatever, or they’d contact them directly within their clinical workplace and say, Okay, this new drug’s going to come on the scene, or this new device is going to come on the scene. What do you think? And it’s just, well, okay, I what I think might be completely different to what my patient thinks. Yeah, you know. So there’s, I mean, for all the well and well in the world, they might create this swanky, posh device which has got all the bells and whistles, but if it’s the wrong color, yeah, for example, I might be laughing here, but some research has shown that children, for example, don’t like the color green over. The color blue, and one company really lost out on their device because it’s green. Yeah.

Garth Sundem  05:06

Okay, so, so you bring up something really interesting, and that is that not only do patients need information to optimize their use of industry products, but industry needs patient input to design their products. Absolutely, absolutely. We’re talking insights here. I mean, so the two way flow of information. And again, I think that pharma and industry in general, we know how to do this with HCPs. You know? We know how to disseminate our information, and we know how to generate insights from HCPs, like you’re talking about. You go to conferences, you have engagements in their offices or virtually, but we don’t know how to do this with patients. You know, you do though, you work directly with patients, yeah, providing information, advocating, you know, things that we don’t know Sure. How do we reach patients?

Kate Davies  06:17

That’s that Well, I think the way to do that would be through a patient support group or a patient advocacy group or something like that. You know, whether it’s, oh, let me think of something, you know, the Addison’s disease support health group or the Turner Syndrome support group. And I know about which we are so many doctors and nurses in the UK. I’m not sure about the states, but so many of us have that kind of extra hat on as a kind of trustee or a patient support group, yeah, to kind of fight the corner for their patients, and we kind of go back to them and say, Look, this has come out on the market, and it’s not until someone actually says, well, actually, I didn’t like that, because that’s not going to work for me. Yeah. And then we can feed that back to the Medical Affairs people, but there’s got to be a way in where they can contact the patients directly. But then there’s that whole data protection confidentiality, well, so So it’s always like they have to create some kind of advert, but not

Garth Sundem  07:27

do you do that now in your advocacy work and in your support work, you talk to the Addison’s group. You have connection to families and to patients, and you hear things from them. Do you feed that back to pharma right now?

Kate Davies  07:42

Yeah, yeah, yeah. Well, for years, for years, okay, yeah, absolutely so for years. For example, if someone with Addison’s or adrenal insufficiency has an emergency, like they’re being sick or they’re being run over or whatever, they have to have an emergency injection of hydrocortisone, a life saving injection. Life Saving injection, similar, in a way, to kind of like an EpiPen. For someone who’s got a severe reaction, and I don’t know if you’re familiar with like an EpiPen, but it’s literally, you flick the top off and jab it in. And they’ve never had that. For people with adrenal insufficiency, they have to faff around with a vial with the powder and the liquid and a needle and syringe and mix it up and make the dose and and for years, we’ve all been saying this is ridiculous, yeah, and the message that we’ve always received back comes down to Money. Yeah, okay. But now someone, someone, is now progressing this research through

Garth Sundem  08:44

and it’s because the patient community, through you, has said we need the equivalent of an

Kate Davies  08:51

app Absolutely because, you know, I can easily give an injection because I’m a trained nurse. I’m a trained healthcare professional. I know how to do all the mixing up and the drawing and the reconstituting and measuring with the needle and syringe, yep, but your everyday Joe blogs on the street doesn’t, and if they’re in a medical crisis and having to do that, then it’s just, well, it could be life altering. Well.

Garth Sundem  09:21

So this is an example of a patient community working through a healthcare professional to say, we need a product, and the healthcare professional taking that insight to pharma and pharma now finally, and I know the challenges, some of the challenges finally, saying, here’s the product, right? This is an example, I think, of how it’s supposed to work. But I don’t think there’s enough examples of that. Or or what I hear from Medical Affairs professionals is that they wish that that conduit of information was was more streamlined, was more efficient. Yeah, you know. So how do we which, which side do we want to dig in on? How do we get patients information? Or how do we help insights from patients flow into industry? I kind of feel like that’s the way this conversation is going is, I think, if you have, if

Kate Davies  10:15

you have that healthcare professional, whether it’s a nurse or whoever, being that kind of advocate for the farmer, advocate for the patient, support group, acting almost like a key to both Venus and saying, okay, look, here’s this product. We need 20 people to come along and do a focus group and play with it and be get the feel of it, and that kind of thing. And then, then that can be, then fed, fed back via the same key, perhaps to the pharma as an ID, yeah.

Garth Sundem  10:51

I mean patient ad boards, that is a thing. Oh yeah, absolutely, that is a thing. And, and Medical Affairs teams are, I think we’re turning a corner to really solicit respect and use the sites from from patient ad boards. You know, what I’m wondering is, if one takeaway is, is just that pharma teams, that Medical Affairs teams need to find people like you, and they need to, you know, be more proactive and and I don’t, I don’t want to say aggressive, that’s not the right word at all. But they need to be more persistent in in finding the professionals who are also advocates. Is that, well,

Kate Davies  11:41

that’s the thing. I think I also, I mean, I think I’ve always felt really strongly as a nurse, and I’ve been a qualified nurse for over 30 years, which is a really long time. But one of the key things that’s that the premise of us being a nurse is that we are the patient’s advocate. Yeah, and we can’t do our job properly unless we’re fighting the corner for the patient.

Garth Sundem  12:06

Yeah, okay, you know that? Okay? Nurses, right? I mean, health care, health care professionals, you know, doctors, physicians, I think they would, they would say the same thing, but, but can sometimes be, you know, and I don’t want to be demeaning in any way, but can sometimes be the prescriber, right? That sometimes can be their role, or they’re the surgeon, or they’re the you know, yeah, but the nurse, it’s almost like you’re a patient advocate, professionally as a nurse,

Kate Davies  12:39

absolutely, you know. If you’re, you’re an, if you’re an everyday patient at home and you’ve got a query about your medication or something, you call the nurse. You call the nurse specialist team. Yep, you don’t, you just don’t call the doctor.

Garth Sundem  12:58

So the people we need, yeah, people we need to find are the nurse advocates working with patient societies, okay? And when we find them, what, we drop the scientific journal article on them. The same way we drop that scientific journal article on a on a on a surgeon or a physician to say, like, Look, our drug really does work the way we hoped it would, and it’s going to help your patients. What do we do when we find you?

Kate Davies  13:30

I think having that supportive evidence is good, yeah, but you do need to start with some kind of Yeah, our drug is amazing. But you need to say, Who is it amazing for? Who is why is it amazing? You know, you don’t want just someone to turn up on your doorstep. So here’s our journal article. It’s 20 pages. It’s got 50 references. It’s a phase three randomized control trial, and it’s amazing here. Take it and and that’s amazing. Well done for getting it through all those phases, but we need to share information with our patients, and it wouldn’t be that, yeah, so we would take away from that kind of article or reference or research topic or whatever, and we need to work then with the pharma people to try and make it more patient friendly.

Garth Sundem  14:25

Ah, so that’s an interesting perspective. So whether, yeah, well, I was gonna say, I don’t think we do that very much now. I think Medical Affairs teams know that we need to start providing patient centric materials, but I think we just do that in our little black box. And, you know, the the most advanced teams, yeah, bring out our patient centric materials. You’re saying that we could be working with the nurse advocate or the patient on these materials. Collaborate. Collaborating. Yeah. Uh,

Kate Davies  15:01

because I think you’ve got to work as a team to get that end product. There’s no point in having that person being better than that person or that person. Everyone has got a role in how to ultimately make sure their patient is going to get the best outcome.

Garth Sundem  15:21

Well, I feel like Pharma has taken almost, like a, like, a modular approach, like, oh, maybe the best teams will will bring in patient insights, and then we’ll go create something and we’ll give it back to the patient community, right? It’s, it’s that, I don’t want to say it’s transactional, but, but there’s, it’s like, we learn something, we do something, we give it back, and I’m not sure we’re really co developing yet. Oh, is that something that?

Kate Davies  15:57

Yeah, I think that’s, that’s definitely a way forward. Definitely, like

Garth Sundem  16:02

actually working on these materials together. You know, I’m imagining like your shared Google Doc or whatever, like people actually, yes, permission. Yeah, exactly, well, and that’s how you know that that a four kilo baby can’t take a 10 milligram pill, yeah. Okay. Well, it’s funny, we’re at time already. Kate, I can’t believe Oh my gosh. All right, we gotta do another one of these. But for today, let’s leave it there. And so to find Kate, you can search very easily her faculty profile at the London South Bank University MAPS members, don’t forget to subscribe. We’re going to get back to this topic a lot in the future. And we hope you enjoyed this episode of the Medical Affairs professional society podcast series, Elevate.