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Representing the patient voice in rare diseases: an interview with patient advocate Dakota Fisher-Vance

The key role that patient advocates can play in medical research is widely recognised, if sometimes underutilised. Beyond participating in clinical trials, patient advocates have an important part to play in engaging and educating other patients, as well as amplifying the patient voice in the medical research sphere. After her appearance on an International Society for Medical Publication Professionals (ISMPP) Annual Meeting 2022 panel discussing the democratisation of medical research, The Publication Plan spoke with Dakota Fisher-Vance, Global Patient Advocacy Associate Director at BioCryst Pharmaceuticals, to talk about her experience as a patient with familial adenomatous polyposis (FAP) and as a professional patient advocate.

First of all, could you tell our readers your story and how you became involved with patient advocacy?

“I am a patient advocate in my personal life as well as in my professional life. In 2011, just after I had graduated from college and was planning to go to medical school, I was diagnosed with the rare, hereditary cancer syndrome, FAP. The diagnosis shifted my perspective as I didn’t want to study the functions of the colon when I was about to lose mine. As I encountered healthcare providers, I saw a lot of deficiencies on the other side of the stethoscope, particularly related to patient education and advocacy. I wondered whether I could effect more immediate change in these areas without going to medical school.

“I saw a lot of deficiencies on the other side of the stethoscope, particularly related to patient education and advocacy.”

I was initially hesitant to get involved as I didn’t want my career to be defined by my disease, but when I was later diagnosed with a desmoid tumour, which is related to FAP, I realised it was something I was going to need to learn to live with. I started to get involved, meeting other people with FAP and created the first YouTube channel for people with my disease. I thought it was important for patients to have a friendly face providing relevant information about FAP, particularly as this wasn’t always so easy to find due to an unfortunate slang meaning of the acronym. The YouTube channel was discovered by a health technology start-up that was creating online communities for specific rare diseases and their model disease just happened to be FAP. They ended up offering me a job and, ultimately, that culminated in my becoming involved in patient advocacy professionally.”

The involvement of patients, advocates and caregivers (PACs) in the rare disease arena is often “unrecognised, unexpected and/or unappreciated” according to your Future Rare Diseases publication. Could you describe the ways in which PACs provide invaluable support to the rare disease arena in particular?

“I always say patient advocacy is invaluable no matter what disease state you’re working in, but I think this is particularly true for rare diseases, where there’s a smaller group of patients. If you’re looking at a disease that only affects 500 people in the world, you really need to work with the patient advocacy community to help elevate PAC voices. Otherwise, how do you know you’re doing what’s best for those patients? There are myriad ways in which patient advocacy is invaluable in rare diseases, as we discuss in the article. The rarer the disease, the more informed and engaged the individual patient is going to be, by necessity, since you’re less likely to have a lot of medical professionals and research in that area.”

“Patient advocacy is invaluable no matter what disease state you’re working in, but I think [in rare diseases]…you really need to work with the patient advocacy community to help elevate PAC voices.”

Your own experience with FAP has perhaps driven your passion for greater involvement of PACs in rare diseases, but can you explain how greater PAC involvement would benefit all stakeholders across diseases and conditions?

“We can step back and ask ourselves a question that I don’t think a lot of stakeholders in healthcare ask: ‘What is healthcare without the patient?’ There could be a terrible disease out there, but if there isn’t a single person with or susceptible to the disease, how are you possibly going to find a cure? I also like to think that bench researchers who may be working on something that is a long way from reaching patients are motivated by the fact that, ultimately, their work could translate into a benefit for patients, not by doing cool science or getting their research published in a high impact factor journal. This also applies to physicians: I like to think that they’re working in these areas because they want to work with, and help, patients. So, no matter what the disease state is, patients and the advocacy groups that have formed to elevate their voices can guide all these stakeholders along the right path.

“What is healthcare without the patient?”

In your article you call for patient-centricity to “become a reality rather than just the latest fashionable catchphrase.” Given their key role in research, trials, strategy, and education, what should pharmaceutical companies be doing in terms of patient involvement?

“This is a big question. Over the years, we’ve started to see pharmaceutical companies shifting their perspectives and becoming more interested in the roles patients play. Initially, I think they saw the importance of payers and then healthcare providers as key stakeholders, and now I think they’re starting to understand that patients are the consumers and that they really matter too – they’re an equally important stakeholder. Once they have that perspective shift, pharmaceutical companies need to constantly monitor their patient community involvement to make sure it’s not superficial, even for those pharmaceutical companies that have high impact activities and high levels of engagement with patient advocacy groups. It is important companies make sure that the belief that patients are equally valuable stakeholders trickles down into functions throughout the whole company. This aspect can      get lost as companies grow, so pharmaceutical companies need to ensure that new people coming in share this value and know how to implement it in their work.”

“[Pharmaceutical companies are] starting to understand that patients are the consumers and that they really matter too – they’re an equally important stakeholder.”

Following your experience creating a YouTube channel to raise awareness about your disease, do you see the role of digital and social media expanding as platforms for patient advocacy? Could pharmaceutical companies do more to engage with patients via these platforms, assuming appropriate regulations are in place?

“It’s a tricky and relevant question. With the YouTube channel that spawned my career in patient advocacy, I was involved in social media from the creator side, and then I have worked for a company that was engaged with digital opinion leaders in different rare disease states. I have seen companies begin to realise that it’s not just non-profits and advocacy groups using social media; there are individuals posting on Instagram and TikTok, and these people are important in the advocacy landscape too. In rare diseases, you may not have an advocacy group, but there may be someone running a blog, so people engaging via these platforms are very important voices in the community. The evolution we’ve seen – from patients sharing their experiences via blogs and YouTube in 2011 to TikTok and Instagram now – is only going to continue to change. In my current position, I take a very conservative approach with social media. As a company, you don’t want to be perceived as interfering with these patient communities or trying to share unsolicited information. We know these communities are important, but it is challenging to know how to engage in a compliant manner. Personally, I would love to see more guidance on how to recognise these PAC voices and make sure they’re heard, to help cultivate these communities.”

“As a company, you don’t want to be perceived as interfering with these patient communities or trying to share unsolicited information…I would love to see more guidance on how to recognise these PAC voices and make sure they’re heard, to help cultivate these communities.”

Which of the projects you’ve been involved with have you found the most rewarding? Are these the same activities that have had the greatest impact on the wider community of patients that you advocate for?

“From a personal standpoint, one of the best things I’ve ever participated in as a patient was a young adult cancer video series. I’m very passionate about building community and providing educational resources for young adults who have or have had cancer. One of the biggest challenges I had when I was diagnosed was trying to figure out how to talk about that experience with my peers. As a young adult, your only encounter with a disease may be through your grandparents, then suddenly, as a twentysomething, you have to start talking about cancer, chemotherapy and all of these scary, foreign things. It can be quite challenging. I had an opportunity to participate in a video series that was specifically about how to talk to your friends about a cancer diagnosis. It was created for and by young adults with cancer: the director, the writer, and the whole cast had cancer or were a care partner of someone who had cancer as a young adult. I knew it was the number one resource that I wished had existed when I was diagnosed, so it was really quite meaningful and one of the coolest, most rewarding things I’ve participated in.

I have also worked on various patient advocacy projects professionally that have had a lot of impact and feel that psychosocial and educational support is just as needed as advocating for research funds and engagement. Improving patient involvement in research is obviously the most important thing, as developments from research activities are what, hopefully, are going to extend lifetimes. But the outcomes of that research may not reach the patients who are living with the disease today, whereas educational and psychosocial support has an immediate impact on the patient community.”

Medical journals are increasingly encouraging the inclusion of plain language summaries (PLS) in publications, which is an important step forward in terms of patient advocacy. How else can publishers help you in your quest for patient-centricity?

“I think there needs to be more education on the industry and academic side, as well as on the patient and patient community side, to understand how patients can get involved in medical publications.”

“I’m really glad to see the movement towards including PLS, but it’s still a very confusing topic, speaking from a pharmaceutical company perspective. I’m not overly involved in our medical publications, but I’m certainly interested, and the ISMPP meeting motivated me to learn more about PLS, among other aspects of medical publications processes. I think there needs to be more education on the industry and academic side, as well as on the patient and patient community side, to understand how patients can get involved in medical publications. PLS might be the initial step, but we need to look more broadly at whether we can have patients as authors on other publications and educate academia and industry on what that looks like. We’re currently asking ourselves basic questions, like what is a PLS, when is one needed, when would patients most benefit from one, what do patients value most, and how does that differ for different disease communities? We’re struggling to answer some of those questions, and it would be really beneficial if publishers could share data they may have already gathered about PLS uptake and value to help us navigate these unknowns.

Likewise, you need to educate the patient community about PLS. One of the questions I got asked at the ISMPP meeting was how many patient advocacy groups were pushing the companies they’re working with to do PLS: from my limited research, I don’t think there’s a huge voice calling for it from the advocacy community. Therefore, more education would be beneficial for patient advocacy groups to leverage making PLS more common.”

The recently published Good Publication Practice (GPP) guidelines: 2022 update include some important updates with regards to patient inclusion (eg recommendations to include patients and patient advocates in publication steering committees and working groups, and as publication contributors, authors and reviewers, as appropriate). How can we make it easier for patients to be involved in publications? What barriers need to be overcome for patients to be key stakeholders in publications?

“I think the biggest barrier to be overcome is shifting the perspective of the academic or pharmaceutical stakeholders who may be leading the publication process to get them to see involving patients in publications as a valuable and worthwhile investment. Equally, there’s a perspective shift required from the patient community to allow them to realise that they have something valuable to add. For example, even though patients may not be writing every sentence of a publication, they can still help interpret the data, or help with the survey instrument used to collect the data. The other challenge is to build the credibility of the patient as a stakeholder. If everyone involved can invest in improving the scientific literacy of the patient community, that’s going to help with building credibility and that perspective shift, but also equip the patient community to be better authors and stewards of information. This all comes down to fostering information sharing, encouraging patients’ curiosity by sharing the data, and getting the patient community engaged with information relating to their disease. Ultimately this benefits pharmaceutical companies, as the more the patient community engages with publications and scientific information, the better authors and self-advocates they’re going to be.”

“If everyone involved can invest in improving the scientific literacy of the patient community, that’s going to help… equip the patient community to be better authors.”

Finally, looking ahead – what do you think the future holds for patient advocacy? What big change would you really like to see?

“I’d love to see a patient advocacy function incorporated into every pharmaceutical company, or at least processes to make sure companies are considering the patient voice in everything they do, and ultimately considering the patient community to be equal to every other stakeholder. I’d love to see that recognised in terms of how we compensate the patient community for their engagement. Usually, patients are compensated at a flat hourly rate, which isn’t the approach we’d take with other key opinion leaders. It’s not just companies that need to recognise the patient community equally: patient advocacy groups can also do more, like having both a scientific and patient advisory board. This applies to patients too: as a patient, you need to know your value and the risks if you’re not actively engaged with your healthcare team. Ultimately, it’s about knowing that without patient engagement and participation, scientific advancement in your disease state may stagnate. Across the spectrum, I think everyone involved needs to recognise the value of the patient community as being equal to that of other stakeholders in the space, and I don’t think we’re quite there yet.

“Ultimately, it’s about knowing that without patient engagement and participation, scientific advancement in your disease state may stagnate.”

When I was approached to talk at the ISMPP meeting about medical publications, it wasn’t necessarily an area I think about day to day or somewhere where I felt I could add value to the conversation, but being at ISMPP, I realised we’re still so early in the move towards involving patients in the publication process and that just being part of the conversation was tremendously valuable.”

Dakota Fisher-Vance is the Co-Founder of Young Adult Cancer Connection, a professional motivational speaker, and is Global Patient Advocacy Associate Director at BioCryst Pharmaceuticals. You can contact Dakota at dfishervance@yacancerconnection.org or on LinkedIn.

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In which areas of health research have you engaged with patients – or if you are a patient, which areas have you participated in yourself? Please select all that apply.

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