On Thursday, April 13 at 7 pm ET, Megan Starshak (@TheGreatBM) and Keri Ann Flaccomio (@keriannecdotes) will host the first #FinelyTuned Twitter chat, “Being Your Own Advocate in Treatment Decisions,” with special guest Aimed Alliance (@aimedalliance), a non-profit organization committed to improving access and transparency around quality, patient-centered health care. To participate in the conversation that evening, all you have to do is follow the #FinelyTuned hashtag on Twitter.
Sometimes I (erroneously) state that RA has never brought blessings into my life. The fact is the connections I have made because of my illness through the online community and, increasingly, social media, are some of the blessings I cherish most. This was underscored during the past weekend’s HealtheVoices conference sponsored
by Janssen Biotech which brought together online advocates not only from the RA community but a multitude of other chronic diseases including diabetes, cancer, Hepatitis C, and other debilitating conditions.
There were two things that struck me profoundly over the course of the conference. (Trust me, as you get older, there are fewer and fewer profound moments, so this was pretty amazing.)
The first is the commonality across all the various forms of chronic illness. We don’t necessarily suffer the same symptoms, but we all face similar challenges: communicating with our doctors, fighting for treatments, battling insurance companies, making difficult life decisions affecting family and work, and many, many others about which healthy people have no inkling. While it’s easy to feel isolated when you have RA or other chronic conditions, the reality is there is an amazing range of people who are just like us. Thanks to “e-voices”, the voices in the wilderness making connections via the Internet, we are able to share experiences, offer and receive support, and build a community of out of individuals who would otherwise, indeed, be isolated. Instead of differences, we are finding common ground and common causes.
The second thing that so affected me was the realization of how powerful and important the patient voice has become in healthcare. Again, thanks to the power of the Internet, patients have a platform and a voice and are now being heard like never before. Whether its been through a natural evolution or whether we’ve shoved our way to a place at the table, I don’t think that genie is every going back into the bottle. If anything, the patient voice — through its online and social media advocates — will continue to resound through the halls of government, through the classrooms at teaching hospitals, across the ivory towers of insurance companies, all the way down through the individual examination rooms where we meet with our healthcare providers. The patient voice is not only powerful, it is empowering, providing each of us with the knowledge and confidence to make a difference in not only our personal healthcare, but how healthcare is managed and provided going forward.
It is not just the RA voice, it is the voices of RA combined with Hepatitis C combined with Cancer, combined with Diabetes, combined with HIV, combined with the great mosaic of other acute and chronic conditions. This combination of voices is creating and will continue to create a cacophony that will be heard.
We are, after all, the consumers of healthcare and there is no greater force in a capitalistic society than that of the consumer. We simply have to understand this power and use it effectively.
There are no words to thank Janssen enough for this experience and for their continued mission to meet the needs of patients — not only by providing leading pharmaceuticals that cure or alleviate chronic diseases — but also supporting the less obvious needs by actually listening to the patients who benefit from their research.
Note that in the pursuit of full disclosure, Janssen paid for my travel expenses for the summit. However, all thoughts and opinions expressed here are my own.