Signs of the (Pharma) Times.
Last week, I was in London at the Pharma Times Digital Club meeting to talk about epatients and interactions with industry professionals (PR companies, pharma companies, etc). It was an interesting event, both in distance and dialog, and I am still wrapping my head around the patient/pharma interaction differences between Europe and the US.
As part of our presentation, John Pugh from Boehringer Ingelheim and I had an on-stage "interview" of sorts, where we talked about what inspires epatients to share their stories online, and the stake we claim in healthcare communications.
Patients share their stories for a dozen different reasons. Some are anonymously writing, hoping to let loose some of the emotional burden of life with a health condition or just to vent without repercussion. Others write with full disclosure, hoping to put a face to a disease that is otherwise veiled in misinformation and misunderstanding. So many are hoping to connect with a community of people who understand, truly understand, and who can help manage the psycho-social aspects of life as a person with a chronic illness.
I started blogging because I felt isolated with type 1 diabetes. And regardless of the opportunities I've been given/earned as a result of blogging, I continue for the same damn reason: community. And as I mentioned on Chris's Just Talking podcast, "Not all of us are trying to make big headlines. Some of us are just telling stories." It's in storytelling that we connect with one another.
What was interesting for me was speaking with John prior to the meeting, and hearing about how pharma (or, more accurately, how some people working within pharma) view patient bloggers. John is the Digital Director for BI, and we've connected through several conferences in the past few years, watching the evolution of patient voices online. During our discussions, the influence of and necessity for the patient voice to be heard across all healthcare silos came up over and over again.
"Patient blogs are immensely valuable for any pharma company who wishes to understand patient's needs better. Patient blogs can give us first-hand insight into the issues many patients face, and can also be the first place potential problems about a drug arise." John said. "They are also an important reminder that medicine is affecting people's lives. This involves emotional issues; it's not just about science and balance sheets. The key for me is to ensure we approach blogs responsibly, and see patients as valued partners, not as an additional opportunity to just promote medicines."
We spoke at length about how some companies in the diabetes space have really become engaged with their patient audience, citing my partnership with Animas as an example. "They trust me - despite the fact that I'm a 'blogger' - and our work together shows that relationships between customers [patients] and companies doesn't have to be contentious. It can be supportive and tuned-in, with integrity and full-disclosure paving that path. It also shows that real patient experiences are what resonate for real patients."
I know it's important for patients and caregivers to acknowledge the psycho-social aspects of a health condition, but knowing there are people within pharma organizations who view patients as important stakeholders in the discussions makes me feel hopeful that there's enough common ground to make a real difference in health outcomes, and not just bottom lines.
After all, we're all patients.
Mandatory "red phone booth" photo
[Disclosure: Many thanks to BI, Animas, and the Pharma Times for their hospitality! Boehringer Ingelheim doesn't make (at least to my knowledge) any of the diabetes devices or drugs that I use. Animas does, however, and they were kind enough to provide my travel, lodging, and an honorarium for appearing at the meeting. My full sponsorship agreement with Animas is outlined here. Also, it rained a ton while I was in the UK. That's unrelated to this disclosure, but still worth mentioning.]