With the healthcare industry increasingly recognising the value of patient engagement, Jo Fearnhead-Wymbs, vice president of patient engagement at Ashfield MedComms, talks to RARE Revolution about how patient centricity is not just a ‘tick-box exercise’ but fundamental to their organisation and success

PEO series: meeting the beating hearts behind the rare brands

1.

How new is the patient engagement role in your organisation, how has it evolved and what are your hopes for the role in the future? 

At Ashfield MedComms we began developing our patient engagement capabilities several years ago, and have really evolved with industry and with the patient community landscape over the past seven to eight years, as the pharmaceutical industry and the healthcare sector have truly begun to recognise the patient as a crucial and highly valued voice in medicines development and healthcare delivery. As a team of experts in the field, we work across our business to ensure we are bringing the patient perspective to the work we do for all our clients. We began with one overall specialist supported by a patient ‘champion’ in each part of the business, to a team of several specialists with many of our delivery teams now capable and experienced in delivering patient engagement initiatives.

2.

What does a typical week entail for you, and are there any specific projects you can tell us about?

Our role is so varied! We are a small team of experts and we respond to the needs of our business and our clients. We might be working with a client to design their patient engagement strategy in a particular disease area or working at a higher level within a company to articulate how teams and functions should be incorporating the patient voice into decision making throughout the medicines development process. We could be creating a programme and key discussion topics for patient advisory boards or co-creating patient educational materials with a panel of patient advisers. The area is constantly evolving so there are always new developments to stay abreast of, such as the legislation relating to clinical trial lay summaries, or the current thinking around the role of behavioural science in patient health outcomes. Training is also part of our role, as we continue to upskill our teams internally as well as working with clients to build patient engagement understanding and capabilities to their teams and functions.

3.

What were your personal motivations to taking up a role in patient engagement?

I’m not a scientist! I love understanding science and medical development, but for me, it is so important to relate that to the ‘why’. Why are we studying this molecule? How do we think it might work in a particular disease, but most importantly, what difference might that make to a person living with that condition? Have we truly understood the needs of people living with a condition, and how can we make sure that our work improves their experience and allows them to meet their own health goals? These are the questions that motivate me and drive me to do better for patients.

4.

What makes the role of patient engagement officer important to your organisation?

We started small but realised instantly that this was a real need for our business and have worked hard to grow capabilities steadily and in a structured way. Patient engagement is not a ‘nice to have’ bolt-on to the work of our med comms business, it is integral to it. How can we communicate about medicines and health, without having a real understanding of the impact of the therapies that we are working on? We simply can’t. As well as being crucial to us doing our work and doing it well, it is an important motivator for our teams. We all need to feel we are making a difference, and understanding the patient perspective is the only way we can know we are doing this in a meaningful way.

5.

In your role, how do you ensure the patient voice remains central?

It’s not actually a difficult ‘sell’ to our teams. Our people want to make a difference and want to deliver for patients, although it’s true to say over the decades it hasn’t always felt like it was possible (or even permissible) to do that in a meaningful way. I’m delighted that this thinking has changed, and we no longer have to ask ourselves “what would patients think or feel about this?” because we know: we already asked them. In my role, I do everything I can to build skills, remove barriers and enable and empower people to bring the patient voice in wherever it is needed.

6.

How do you reconcile operational business needs with elevating the patient voice?

I don’t see there being a conflict here. Perhaps a decade ago, the thinking might have been that patient engagement and patient centricity was a soft ‘fluffy’ element of work that would make people feel good but not necessarily deliver business outcomes. I think we’ve demonstrated over the past few years that this is categorically not the case. When we understand the patient experience and the unmet need, we are far more successful in designing and delivering solutions that meet those needs. What is baffling is not how we reconcile that with business needs, but how we weren’t doing this all along.

7.

What are the most rewarding aspects of your role?

Every time I have the privilege of hearing from a patient about their experience with their condition. Our health information is confidential, it is ours and ours alone, and if a person living with a condition feels comfortable sharing their perspective, it is a gift, and I will strive to be worthy of it.

8.

What is your proudest moment in your career thus far?

It would be easy to recall things patients have said, but there are many many of those moments, and to say they are proud moments isn’t quite accurate, they are moments of truth, when you see something more clearly and understand what you can do about it, and I feel honoured and privileged that people will share their stories with me. But proud moments, I would say I am proud of the times I know that I have been able to work with a company to help them make a better decision on the basis of understanding a patient perspective.

9.

What advice would you give someone considering working in the rare disease space?

It’s an area where you can really make a difference, so let’s not waste that opportunity. Be authentic, listen to truly hear and understand, and take on some responsibility for elevating the voice of communities who might struggle to be heard. It’s hard sometimes not to feel personally and emotionally involved in a cause and many would say it is unprofessional to feel that way, but I don’t think it’s a bad thing. It makes us passionate, it makes us human, and it makes us far more likely to do the right thing by people living with rare diseases.

10.

If you weren’t Patient Engagement Officer of Ashfield Medcomms, what was Plan B?  What did your 10-year-old self want to do as a job?

Well I was a pony girl, so I would have said an Olympic showjumper! So you could say this is plan B, but it feels a lot like winning to me. Throughout my teens and early adulthood I had NO idea what I wanted to do, so to find out that this role exists has been an amazing ride and an experience that I feel privileged to have been able to enjoy.