In the latest episode of Impetus Digital‘s Fireside Chat, Caitlin Wagner, Associate Marketing Director at Pharming, sat down with me to share her expertise on innovative patient engagement strategies. Among many other things, we explored the roles of mobile apps and social media, the impact of the COVID-19 pandemic on how Pharma engages patients, and her predictions for the future.
Here is a sneak peek of our conversation:
Q: Tell us a little bit about the HAE type of patient and why they were the perfect type of patient who could really use the RUCONEST app and what exactly are the problems were you trying to solve there?
A: One of the specific challenges for rare diseases and for people who live with Hereditary Angioedema is that it is so rare. The incidence is that 1 in 50,000, there may be 8,000 to 10,000 patients in all of America who live with HAE. The challenge for them is really finding one another, finding the resources, and finding clinicians that know about HAE.
One of the challenges as you know, that we started experiencing in 2020, was that we weren’t able to get together in real life. This had been a problem for HAE from the very beginning. All the patients were so spread out from one another so, even from the beginning, we had to be mindful of what can we do to foster community online. What can we do to make sure that patients have all the resources that they need at their fingertips rather than having to be spread out across the US?
Specifically for the RUCONEST app, I’ll pick three of the main challenges; one was awareness and education. HAE is a disease where a patient may have a sudden episode of swelling. Their hand or even their throat or stomach can swell without warning and if they don’t have an appropriate medicine – or even if they do sometimes – they have to rush to the ER. They may get there and the person in the ER has never heard of HAE. They may see their swollen and think, “Oh, this must be an allergic reaction,” but antihistamines won’t solve this problem. We needed to create a way for the patient to tell the ER, this is what’s going on to give them something credible that the ER wouldn’t ignore. So we put in a secure place for people to store their lab values or letters from their doctor.
Another challenge that patients face with HAE is that these episodes of swelling happen at any moment at any time without any kind of regularity. Patients needed a way to track their HAE attacks over a long period of time so they could share an accurate history with their doctors. One of the really cool things that we did with this app that hadn’t been done before is we created a secure totally HIPAA compliant way for patients to store the incidences of all their HAE attacks in a way and they could even upload the pictures. They can say where on their body it was. All that could be stored and then a report could be generated for that they could safely and securely share with their physician to keep them in the loop. When you only see your doctor once a year, you might not remember every single thing that happened to you over that time.
The third thing that we did was just to make sure we had a library, a database of comprehensive information, videos to educate themselves, their family members, or whomever about what it’s like to live with HAE.
For more of our discussion, you can watch the whole Fireside Chat with Caitlin Wagner, or listen to the podcast version, below.
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Impetus Digital is the spark behind sustained healthcare stakeholder communication, collaboration, education, and insight synthesis. Our best-in-class technology and professional services ensure that life science organizations around the world can easily and cost-effectively grow and prosper—from brand or idea discovery to development, commercialization, execution, and beyond—in collaboration with colleagues, customers, healthcare providers, payers, and patients.