Blog

Learning from experience: Life as a patient influencer

21.04.2020

Despite years of working in the healthcare space on all kinds of common and uncommon
diseases, Lucy Saunders (Director) – like so many people – had never heard that migraines could become chronic. Until that is, she was herself diagnosed with the cruel condition. Yet with characteristic determination and selflessness, Lucy has turned her journey into an opportunity to play a pivotal part as an influencer in an online community and use her background in market research to bring patients together and support them in sharing their experiences. Read more about her inspiring story.

Q. Hi Lucy! What’s your story? How did you get to HRW?
I have always been fascinated by medications, ingredients and formulations (I’m the type of person who reads the toothpaste packet for genuine fun) which lead me to study Biological Sciences at university. After that, I was interested in allied healthcare and considered becoming a dietitian, so undertook a fascinating MSc conversion course in Nutrition. However, after experiencing life in the UK’s National Health Service, I found it a bit too stressful and decided to look elsewhere.

I didn’t know that healthcare market research existed until a careers advisor (whose son-in-law works in the industry) mentioned it to me. It really is the perfect role for me: we’re always learning about new therapy areas, supporting the development of life-saving treatments, and speaking with HCPs and patients regularly. There’s no other role I could imagine myself doing!

Q. How long have you been at HRW?
I joined in 2014 (having worked for another firm since 2012), but unfortunately in 2018 I decided to leave work and take time off due to some strange symptoms I’d been having. It took a while to find out what was going on (a story which would be a whole article in itself), but in the end I was diagnosed with chronic migraines.

Despite years of working in the healthcare space on all kinds of common and uncommon diseases, I had never heard that migraines could become chronic. I learnt the hard way that this means over 15 migraine days a month. It really is a cruel condition, and at my worst I was having a migraine every single day with all the accompanying symptoms, such as brain fog and dizziness.

It’s taken around 18 months, lots of medication changes and several different HCPs, but slowly and surely I’ve improved and experience migraine attacks every 4-6 weeks. This frequency is actually a really rare improvement for this condition – and I’m still aiming to be migraine-free someday!

Q. What have you done to tackle your migraines?
Wow, where to begin. At a very high level, I decided to look at myself and my lifestyle holistically, almost as if I were a wealth of data to analyse. I decided to focus on three areas: mind health, physical health and lifestyle. For example, with mind health: over time it became clear that anxiety was a key trigger for my migraines and so I decided on both addressing and preventing anxiety in many ways. In terms of physical health, I turned to yoga and running, which stretched my muscles nicely to prevent the muscular pain that so often comes with migraines. And in terms of lifestyle, I was kinder to myself overall by taking my time with things and focusing on the things that “must” be done rather than “could” be done.

Of course, through all of this, I was under the care of a neurologist and tried several different treatments – some of which worked wonders, others were really quite awful (nightmare hallucinations of people walking around the room, anyone?). Migraine is a mysterious condition despite its prevalence (affecting 1 in 7 people). The medications historically available are those originally developed for other conditions such as depression, epilepsy or high blood pressure. These treatments can take weeks to take effect, leading to a long period of “watch and wait” whilst continuing to suffer symptoms.

I am very intrigued in the newer migraine treatments, of which we now seem to have an abundance, including CRGP inhibitors, ditans and gepants. Of course, in the UK a major issue is access, but it’s still nice to know that pharmaceutical companies haven’t forgotten us migraineurs and are using cutting-edge science in order to help us.

Q. What have you learnt from the experience?
For me, the support of the migraine community really helps. Chronic migraine is a notoriously difficult disease to recover from, due to its mysterious causes, the fact it manifests differently in each person, and, until recently, the lack of specific treatments. Being an invisible disease, some people don’t appreciate its severity and consider it as “just a headache”.

There are several wonderful patient groups, such as the Migraine Trust, Migraine Summit and Migraine Again, but what helped me even more were fellow migraine sufferers on social media. Like I said, when I was first diagnosed with chronic migraine, I hadn’t heard of it before, so it genuinely felt like I was the only one in the world with these problems. But curiosity lead me to Instagram and Facebook, and it helped so much knowing that others understood what I was going through.

Q. Tell us more about the online migraine community?
Over time we have become a very close-knit, supportive and inclusive community, sharing experiences and offering advice. I’ve made friends, many of whom I’ve met in person and one even became my wedding stationery designer! I’m in a unique position because my experience in healthcare market research equipped me to develop my own Instagram account (@quitting_migraine) and blog. After all, as researchers our skills are to listen to others, distil data and share it clearly; skills which come in handy for social media.

Through my influencing platforms, I have been a part of so many opportunities I never knew were possible. For example, I am a migraine app collaborator, was a contributor to an invisible illness campaign, and even took part in a pilot study for an upcoming clinical trial testing a digital health protocol. More recently, I’ve joined the HQ of chronic illness charity ‘Spoonie Village’, made up of me and the two founders. We plan to run lots of projects to bring people together and one of my roles is to design our feedback questionnaires – which almost feels like serendipity!

Coming back into healthcare market research, I know now not to forget the power of social media listening, especially for accessing how patients truly feel towards a certain condition or treatment. People often find it easier to talk to strangers about their condition than friends and family; there is a big conversation going on out there in many, many conditions, which is publicly available for the most part, and we need to make sure we don’t miss it!

Q. What is your role at HRW?
I got well enough to return late last year (yay!), which illustrates nicely that I’d come full circle. Obviously, my health continues to be the priority, and HRW are very understanding and flexible in helping be achieve this. In addition to my main role ensuring my clients are happy, I’m also our internal Migraine Lead and sit on our innovation workstream.

From my experience, one thing I’ll always focus on is capturing a patient’s voice in the most optimal way, which aligns with HRW’s outlook. For example, one of the many ways HRW sought to discover the patient voice was through a self-funded study in partnership called RealityMine, the blog article for which can be found here, (during my time away I was even a test-subject for the study). I’m proud to be at the forefront of capturing the patient experience, it feels like giving back to the community which helps me through.

 

By Lucy Saunders (Director)

< BACK TO BLOG