PJ Pod: Involving patients in pharmacy research (transcription)

The audio transcript from this episode of The Pharmaceutical Journal’s PJ Pod.

Alex: Hello and welcome to the PJ Pod, brought to you by The Pharmaceutical Journal, the Royal Pharmaceutical Society’s official journal. 

I’m Alex Clabburn, The PJ’s senior editor for research and learning, and in this episode — part of the August 2025 digital issue — we’ll be looking at the important question of how to involve patients and the public in pharmacy research.

[Short music break]

It’s important to clarify what we mean by public and patient involvement. The RPS have defined it as, and I quote: ‘Actively working with patients, carers, and members of the public as part of the research planning, design, management and reporting process. It can be thought of as a collaboration or partnership between researchers and members of the public, through which research is co-produced.’ End quote.

The idea is that by meaningfully engaging with those most affected at each stage of the process, research becomes more relevant, answering the questions that matter most, with an optimised process that produces better results and outcomes.

But what does that actually look like in reality? Well, in this episode, I spoke to five nominees, including the joint winners, who were shortlisted for the 2025 Outstanding Pharmacy Early Career Researcher Award, popularly known as ‘OPERA’. 

Launched in 2023, OPERA is the newest award from the Royal Pharmaceutical Society and The PJ, that recognises the significant contributions of members of the pharmacy profession, including pharmacists and pharmaceutical scientists, in the field of research.

Providing evidence for wider engagement, including patients and the public, is one of the three criteria that the independent panel used to assess the nominees. As part of the judging process, we interviewed the individuals who were shortlisted for the award and had the opportunity to talk to them about some of the ways they are involving patients and the public in their work. 

Just a quick note on the audio — these interviews didn’t start life with a podcast in mind, so please excuse any low-quality sound in the following extracts.

With that said, I started by speaking to Smita Salunke, a senior research fellow at the UCL school of pharmacy, who is leading global efforts to improve children’s medicines. The patient perspective is very much at the heart of Smita’s work and when it comes to optimising paediatric formulations, the value of co-design becomes very clear:

Smita: You know you could have a life-saving, a very innovative, fantastic device, which works fantastically, but if a mother is not able to manage it or whether there is a cost thing that is involved into it, if it is too costly, if the patients are not able to use it, all this innovation is of no use.

So if you cannot make it to the patients really, all the innovations and all the great work and the research that we put into the collaboration with all the academics and everything, it will be all gone. So it’s very, very important that we involve the patients. It’s very important that right from the start when we are starting, we are doing the research, to think about the translation.

Alex: This was also something reflected on by Quonita Anjani, research fellow at Queen’s University Belfast and one of the joint winners of this year’s OPERA award, when we spoke to her about her work developing new approaches to microneedle administration.

Quonita: Well, it’s really important because the final product will be used by them, I mean by the patient for sure. And that’s why like, even for now, even whenever we do the proof of concept study, which is like, it’s not like we will not see the product in next month let’s say, but we still need to consider like, OK if I’m the patient, if I need to take this kind of microneedle or this kind of tablet or this kind of formulation what would I feel are if, would I like this formulation or not? Something like that. So that’s why to involve patients in any research is really important because that’s the main goal of doing research in this field that at the end of the day, the one that will use this this product is the patient itself. So that’s why like we need to involve them in every step of the research.

Alex: This point was echoed by Smita.

Smita: Children’s medicines would fail if we ignore really the hands that administer it or the mouths that swallow it. So it is very important for my research to embed the engagement into every stage of my research right from designing it to delivering it and I ensure that I include the children, the caregivers, parents, healthcare professionals, the industry developers, the regulators, you know, and especially the children, caregivers and the healthcare professionals. They’re not just recipients, as I said, they are the co-creators in my research. So for me, the engagement plays a very, very critical role in my research.

Alex: Smita also talked about how there’s an added benefit whereby the individuals participating in her work are empowered by the experience and increase their knowledge and understanding of the medicines and devices they’re using. 

Smita: So I run quite a lot of workshops and my research team — we all work together really — in both the low-middle income countries and the high-income countries, to bring the children together, to bring the children, parents, healthcare professionals, to bring them together, to have these workshops with them to really inform them, to raise the awareness, to inform them how the devices, how the medicines, the formulations, that are designed. You know — how do they feel about it? What challenges do they face? — to really understand it from the user perspective. So then you know, it’s like co-creating the solutions instead of you know them just being a recipient of it.

Alex: Working closely with patients doesn’t just help them, though. This collaboration can also help researchers to identify better clinical questions. Wallis Lau is a lecturer in pharmacoepidemiology and drug safety at the UCL School of Pharmacy and she told me how a simple conversation with a patient proved to be the starting point for an interesting new research project. 

Wallis: So this research question was actually from a patient of a clinician that I work with. So the patient has a family history of diabetes, but her son has some behavioural problems. The clinician wanted to prescribe any antipsychotics, but then the parent is worried about the risk of diabetes. So we have a chat with the patient to discuss what would benefit from knowing, like informing her of the risks of antipsychotics, to make her decide whether her son should take antipsychotics. And then and then she told us basically she just want to know simply the incidence of diabetes that would be really helpful. Like if her son takes antipsychotics from age eight, what is the long-term risk? So I realised actually we don’t need very difficult analysis to benefit patients. 

Alex: Involving patients can also provide valuable insights into the practical aspects of research, such as the best ways to recruit participants and what the most appropriate outcome measures might be. Closely involving patients can also help to generate better quality data and this was something that came through when we spoke to Ryan Hamilton, associate professor of antimicrobials at De Montfort University.

Ryan: You need to think about who’s receiving the medicines through those pathways — it’s patients. And if you’re trying to improve patient care, it’s the care we’re giving to people.

And so that’s why I’ve made more of an effort now to do research with patients and get them to contribute to, kind of the design of the research, but also the undertaking of the research and creating that data. Not just accessing the records and taking the data but getting them to kind of create that data. For me, that creates a lot more interest. 

Alex: A further benefit of patient involvement is the improved translation of results. Smita described how patient involvement can be a powerful tool for influencing policy and building a strong evidence base that can make it easier for people in positions of power or influence to make decisive changes on the ground. 

Smita: To give you an example, when Indian regulator, so we did the workshops in India and when an Indian regulator adopted our workshop findings and committed, you know kind of agreed ‘yes, there is a gap in national guidelines’ and committed that we need to develop these national guidelines for the paediatric devices in India, the device used in India, it kind of validates this approach of engagement you know. It shows that the collaboration, the community-led research, can translate you know can translate the research into the practice and policy.

Alex: From my conversations with the OPERA nominees, it quickly became clear that there’s an inherent logic to patient and public involvement in research. It can directly generate ideas and research questions, strengthen and improve the research process and selection of methods, while empowering those most affected, amplifying their voice and providing them with a degree of agency over their condition or the medicines used to treat it.

So how exactly can researchers involve patients in the process? 

The good news is that if the potential benefits of the project are made clear it can be surprising how quickly people will step forward. 

Here’s Quonita again.

Quonita: So just a few months ago we did human trials, so we asked them to apply blank microneedles in several parts of the body and then we asked them, like, is it painful? Or we checked using the our one of our techniques to see if the microneedle really inserts to the skin or not, something like that. And, to be honest, I was happily surprised because I thought that it’s going to be difficult to get volunteers to be involved in the project, but actually we just need maybe like 10 people, but then there were almost 50 people who were interested to get involved in that project. So I just asked them, like, why you are interested? I mean, we don’t have a product yet and we don’t know if it’s safe or not, like, why you are coming here and then you, I mean you give your hand to be applied for a microneedles? And then they say that, well, we are excited that we will have this kind of product in the future and we are happy and we are proud that we will become part of the study.

Alex: In Qonita’s case it was about working with patients to test a new device but patient involvement can manifest in a variety of ways.

Depending on their skills and interests, patients might participate as advisers or members of steering groups, or they could share their lived experience with the researcher helping to broaden their understanding of the subject. They might provide feedback on questionnaires or survey design helping to improve the value of the results or provide input later in the process helping with dissemination or implementation activity. There are no real limits on the types of involvement they can have. 

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So while there are many benefits to involving patients, it’s important to acknowledge that barriers do exist. Involving patients requires time, resources and commitment both from the researchers and the patients themselves, as well as providing appropriate training and support.

There are also specific contexts where recruitment can be particularly challenging.

Ryan: I think it’s easy to get patients involved generally. It’s getting the right patients involved, which can be tricky. Particularly with, so I found through my research with patients that live with resistant infections is they can become very ill very quickly. So they might not be able to contribute to meetings and set milestones in the research pathway so that kind of insight can be missed out that way.

Alex: This point about identifying the right patients is worth dwelling on. For example, older people and children are often under-represented in trial data due to ethical concerns, safety considerations and other practical challenges. But there’s an important distinction between recruiting participants and patient involvement in the broader sense and there are different ways researchers can overcome some of the barriers that prevent the people best placed to contribute from getting involved.

Jennifer Stevenson, the other joint winner of OPERA 2025, is a Lead pharmacist for older adults at Guy’s and St. Thomas’ NHS Foundation Trust. She works in geriatric health and frailty, and made some astute observations about how researchers can approach different groups who are sometimes harder to reach. 

Jennifer: There are a lot of older people out there who would be really willing to engage in research and I think that there is a little bit of societal ageism goes on, just assuming that older people won’t be interested and actually there just needs to be that opportunity to go out to them, to think creatively. So, you know, can we go to places where older people are? So where is that? Are there kind of community hubs? Is it at kind of children’s day centres because they’re looking after their grandchildren? Do we want to think about, you know, kind of, what degree of frailty are we thinking about? So actually, you’re not going to get your more advanced, frailty, older adults being able to be involved and contribute if you’re going to day centres because they’re likely not there. They’re likely to be potentially in care homes or at home. So thinking creatively about how we can reach those communities so that we have that kind of broad representation.

Alex: This point extends beyond just age.

Jennifer: We’ve got to be thinking about how do we access the populations that are going to be impacted most by the work that we are doing and actually what you’ll find is the issue of intersectionality. So it’s those who are experiencing, you know, kind of multiple health inequalities due to ageism, potentially disability, maybe cultural biases. So I think that’s probably the kind of the key challenge is, looking at the population who’s most impacted and then where are they? There’s been some great work done locally in African hair salons that we have in South London around breast cancer screening and these sorts of things and upskilling the hairdresser to have these conversations with patients about this, because the relationship and the rapport is far better, the trust is there than there is necessarily with healthcare professionals.

Alex: Researchers also need to be mindful of ethical considerations related to patient involvement, such as confidentiality and potential conflicts of interest. Patients also need to be able to give informed consent and it is important for researchers to listen to any concerns that people may have and work with them to address them.

Alex: From all of the conversations I had, one of the biggest takeaways was the importance of making sure that patient and public engagement is genuine and meaningful. It’s crucial to ensure that patients feel their contributions are valued and respected and that their insights will be acted on. 

Ryan: And I think that’s probably the take away, so not just have them as an add-on to a meeting — give them the space to kind of create their own voice and have some real kind of input into the research. I think that’s one of the things we struggle, well I think could happen is it’s just seen as a bit tokenistic and you go, ‘oh, I’ve got one patient who just comes to the meetings’ rather than actually engaging with them and I think that’s probably more beneficial.

Smita: I would say from my own experience I would advise everyone or, you know for the researchers really, to aim to align their values and the purpose really, you know the true purpose behind there. So, we all have the passion, most of the researchers have the passion, they have the curiosity, they put in all the hard work, but you need to ensure you can challenge the existing paradigms. Challenge the existing paradigms, look forward to the new paths towards positive change, make your research accessible, translatable, scalable. And that’s where my advice is really, you know, the effective and efficient translation of the research to practice will create a big social impact. And this is something, one important thing is this cannot be done in silos. So the transformative research or the translations into practice you cannot do this in silos, so it’s very, very important that you collaborate with different stakeholders. And then, as I said, the patient is the most important, the first one.

Alex: What these reflections shared by the OPERA nominees show us, is that patient and public involvement in research is much more than a tick-box exercise. When done well, it significantly improves the process in a variety of ways and offers researchers an opportunity to draw from a rich pool of perspectives that can help ensure their research remains relevant, high quality and impactful. 

Doing it properly requires time, resourcing and commitment over the long term, along with a willingness to overcome barriers, but if researchers are open and can think creatively, solutions can usually be found.

Our thanks to Qonita Anjani, Ryan Hamilton, Wallis Lau, Smita Salunke and Jennifer Stevenson for their contributions to this episode.

If you’d like to learn more about their research work you can read their profile pages on the OPERA hub page on The PJ. A link to this will also be added in the show notes.  

And finally thank you, our listeners, for joining us.    

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Until next time, bye bye.