The Patient Uprising: A Confederacy Begins

This is to accompany the recent re-post of Patient Uprising.

Last year I wrote a post called the Patient Uprising: A Revolution is Coming. In that post I put forth my thoughts on how social media and how the Health 2.0 movement was changing the game for pharma and diagnostics. Nothing that has happened over the last 12 months has changed my opinion of this Health 2.0 movement and in fact it’s exciting to see some of my predictions coming closer to reality.

I recently was privileged to participate in an event that brought bloggers, online community leaders and patient advocates together with leaders from a prominent association that has the mission to prevent and serve those living with a chronic disease. What I observed left me convinced more than ever that the patient uprising will not only occur but is already underway and accelerating pretty quickly.

The conversation flowed freely and the passion to lead and help fight for the cause was clearly evident by all parties in the room. The question that came to my mind, is not how bloggers, community leaders and patient advocates become more plugged into the status quo and play nicely in the proverbial sandbox, but how do you harness the power and passion this group of people brought together by a common disease to develop a confederacy that can really work together to make a profound difference? How could they develop a bottom up, grassroots, groundswell of change?

What I surmised in my Patient Uprising: a Revolution is Coming post last year was that this group over time would eventually form a tighter bond and connection and turn the tables on industry and begin to have an impact on how industry thinks and behaves. This could apply to developing not for profit organizations to help fund a cure to forming an NGO (non-government organization) that serves as the link to this loose confederacy (in this case when I say confederacy I mean loosely bound communities and there is no direct or indirect reference to the American Civil War. Please don't comment on my word choice) of bloggers, community leaders and patient advocates. With this organization they could begin to band together to take their fight direct and not necessarily fight the fight of the large association. Tactically speaking, they could direct their energy, passion and resources to the areas that mean the most to them versus the larger associations who may fund research with long lead times and not so evident or visible results. This would be something analogous to instead of donating to the United Way, which distributes money to many hundreds of not-for-profits; you create your own not-for-profit that focuses efforts on your specific cause and passion.  

The rally cries that I kept hearing from the bloggers, community leaders and patient advocates was, “how can we do more?” and “how can we become more involved?” Now, the “establishment” is attempting to understand the perspective of the bloggers, community leaders and patient advocates. In turn the bloggers, et al. are trying to understand why the establishment is not doing a better job of involving them in the fight to find a cure. After all, they are on the front lines and are “of the people, for the people” and interact daily with the very people that the establishment is trying to reach on a daily basis. It seems like a perfect pairing, but it’s not quite that simple.

In all revolutions, there is a small uprising of people with a common objective rising up against the establishment. While industry and bloggers, et al. are now finding ways to work together and work toward that common objective, I do foresee the day that they stop looking so directly to industry for leadership and start looking to each other. I think they are beginning to realize that they have the locus of control.

When that fully happens, which I think is sooner than later, they will have realized the full patient uprising. The results, I believe will be long-term and profound.

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  1. Andrew Spong said...

    As the first European reader of @epatientdave's @laughsing (according to him, anyway), you already know I'm going to agree.

    We've discussed before about there being a patient-shaped tsunami coming to sweep away all our preconceptions about what healthcare design and delivery should look like, and I still don't feel that EHR vendors and their ilk quite 'get it' yet.

    If you're a healthcare business and you're not 100% focused on putting the patient at the centre of everything you do, and making improvements in patient outcomes your #1 objective, someone else will, and your business will be impacted.

    It doesn't matter how big you are. No player in this particular game is too big to get carried out of the ring, and focused, patient-serving health start-ups that draw a bead on need (niche or otherwise) have the potential to succeed.

    The era of Big everything may be coming to an end, and the health vertical is going to be just as affected as every other.


  2. Maureen Hall said...

    I don't know if the uprising is here yet. I see those in my parent's generation still willing to go with the flow.

    But I do know that our healthcare system will be broken as long as it is organized and run by and for the providers, insurers and marketers -- and not the consumer. The track record since the Reagan Era shows that "industry" control drives costs up, reduces access and worsens outcomes. But they hide these failures by blaming them on the stupidity and unhealthy lifestyles of patients.

    Patient advocacy groups like Taking Control of Your Diabetes ( that are patient-centric and KOL-led are making a difference and improving outcomes by empowering patients. But I agree with Andrew that most of the industry just doesn't get it -- ad in fact are actually threatened by the idea of patient empowerment.

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