Philadelphia, the city of brotherly love, provided the perfect backdrop for e-Patient Connections 2011, a two day summit about reaching and engaging both patients and their caregivers in the digital age. Right away conference organizers set the tone that the patient voice should be our focus by introducing respected e-patient bloggers and advocates, such as our friend “E-Patient Dave,” and placing them in the front row of conference seating.
We were there to catch all the action and connect with both patients and those aspiring to work with them, from physicians to hospitals to pharma and health plans. What did all these healthcare constituents have to say? Here are some of the important key points we kept hearing over and over:
The winning platforms will bring together all the puzzle pieces in health. Multiple data sources (i.e., the patient voice, scientific publications, lab results, medical records, longitudinal outcomes – the list goes on and on!) give us a complete picture of a patient’s journey and status. Furthermore, many stakeholders (i.e., patients, caregivers, doctors, payors, government, industry) have a vested interest in understanding that complete picture.
Real-world patient data is not a fad. Like it or not (and we happen to love it!), the patient voice is here to stay, and patients are going to continue sharing their real-world experiences everywhere. PatientsLikeMe members may be blazing this trail, but we are not alone. We were thrilled to see demos by WellApps and HealthTap, too.
Having fun is key. “Game-ification” – or integrating feedback mechanisms and some friendly competition into traditionally non-game environments – is a growing social engagement tool. The best health platforms will offer participants a purpose, incentives and increasing challenges. Think of the potential applications: for example, rewarding patients for achieving better outcomes or for using their medications as prescribed.
All in all, we came away with some great patient insights and ideas from the presentations we attended. The resounding message from organizers: “It’s not about the conference. It’s about what you do after the conference.” In between, we’ll be keeping tabs on our new friends’ comings and goings through the e-Patient Connections discussion group on LinkedIn.
As always, we’ve got lots of things on the “to do” list – based on your feedback and our own ideas – to make the patient experience better here at PatientsLikeMe. Then again, we like to keep a growing list. So what would you like to see us do? What other “puzzles pieces” would you like to see incorporated? We’d love to hear your thoughts in the comments section.
The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare. You may have heard about our executives at industry conferences, government hearings, or even on TV. Highlights below.
Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how industry is engaging directly with patients and tuning into the “unvarnished truth” patients are sharing about their real-world disease experiences.
Listen | Ben Heywood (Co-founder, President) answers questions about the launch of our new organ transplants community and our collaboration with Novartis
Listen | David S. Williams III (Chief Marketing Officer) shares industry best practices in using social media for clinical trial recruitment (recently presented at the CHI SCOPE conference)
Listen | Paul Wicks Ph.D. (R&D Director) discusses nexus of personalized medicine and information technology (highlights from his presentation given at a Personalized Conference event by ASU, Mayo Clinic, AAAS, FDLI)
Listen | Jamie Heywood (Co-founder, Chairman) visits “on call” to talk about the impact of real-world experience on drug safety
Listen| Sally Okun RN (Health Data Integrity Manager) gives her perspective on improving patient engagement and fostering patient-provider partnerships through tools like the Doctor Visit Sheet (highlights from her presentation at the Patient E-Centered Health event by The Stevens Institute of Technology)
Watch | Maureen Oakes (Product Manager) shows you cool new website functionalities making their debut with the new transplants community
Watch | Paul Wicks Ph.D. (R&D Director) talks about the value of patients measuring quality of life through online patient-reported outcome