2013 Update - The Patient Uprising: A Revolution is Here

Update: 2013

Increasingly you are seeing the predictions that I put forward in 2009 coming true. Particularly when you look at how the power has shifted towards the "e-patient" and innovation is being driven at the consumer level that is being adopted by industry. I think this will only continue and crowd-sourcing ideas and incorporating them into development plans will only increase. The real nirvana for patients will be if they can set aside individual efforts and form a collective to really leverage their strength. In my view that is loosely coming together, but I would expect given the sheer passion of these individuals that it will start to being more organized very soon. I see this already in a whole host of initiatives that have been taking place in the industry.

The next question is who is going to seize item 5 "Communities Define Future Products & Services"  and truly define products based on input from the consumer AND bring them to market? Who will license or develop solely based on this feedback? Bigger risks usually yield big rewards and if done properly, I think you could tap into crowd sourced knowledge and loyalty that will be difficult to unseat. 

Seth Godin was the keynote at the conference I attended and he had one line that jumped out at me and made me want to dust off this post.

"Revolutions wipe out the old before the new is created."

I had never thought about it in that context but it is true and connected health, e-health, empowered health, whatever you prefer to call it is facing a little bit of an existential crisis, because it is clear the revolution is occurring but the new is definitely not fully formed.

I could more fully flesh the concept that I put forth over 3.5 years ago, but that would gilding the lilly to a certain extent. Sure, I'm more enlightened now then I was then and have had the opportunity to really learn from a great number of people, but the fact is that the premise is still true and well on its way.

Perhaps the biggest thing from my perspective is that the empowered patients, bloggers, patient advocates, etc. haven't yet realized how much power they wield. They are rocking that boat, but when they realize the collective power they hold when they organize - watch out.


I have talked in the past how health care and technology is the 10 year trend. I won’t retell that story, but you can see my thoughts here. It is truly a topic where the reach consistently exceeds the grasp.

Technology once again plays a big role in the Obama health care reform plan with the multi-faceted goals of modernizing the system to lower cost and improve quality while also working to improve prevention and management of chronic diseases which (by many estimates) accounts for 80 percent of total costs. These are very lofty goals.

Technology plays a vital role in driving efficiency across the entire continuum of care. The major players driving this “reform” are many and including your usual suspects of government, corporations, policymakers and the requisite lobbyists and special interest groups.

It seems hard to fathom that something so large and unwieldy could bring about an immediate and lasting change that led to consumers getting better care faster.

The fact is that despite best intentions, untold sums of money will be spent to put a band-aid on an axe wound. The pace of change required to make a difference doesn’t happen organically and despite best efforts to move an immovable mass it will only happen as quickly as the fastest mover; the government is not known for being quick. I think it will continue to occur in fits and starts and not be the solution that it could be for a number of years. And by solution I mean a true end-to-end process that is best described here.

With that as a backdrop, as I survey the scene from high atop the hill (the figurative hill not the literal Hill in D.C.), I see a void so large that you could drive a truck through it regarding where I think real change is occurring and will continue to come from.

Revolutions Always Have Beginnings

A revolution is not about you, it’s about the collective. The hallmarks of a revolution are a few daring individuals who are angry about how things have come to be and challenge the status quo and create a cause or culture with like minded individuals. Typically very intellectually thirsty, these individuals have strong convictions and question the current status. They connect with others and commit to making a change. The model for a revolution can be seen over and over again in history and I think we’re in the beginning stages of a healthcare revolution that could uproot and change the current health care delivery model.

The Shift

The missing part for me in all of machinations of these huge grinding gears and sausage making in the current health care system is the patient. The Internet and social media, which by now we are all familiar with, is having a seismic change on how people interact, share information and connect with each other. Social media has enabled the consumer to have a voice and demand two-way dialogue and this is a change that is happening everywhere.

I am confident that real change is happening and will continue to come from the consumers who are empowered and are talking and sharing and that no company, insurer or doctor has direct influence over more than is absolutely necessary to either write the prescription or pay the bill. Common bonds and information is spreading and building entire networks of people, who are banding together across all conditions and disease states to share, learn and support each other in their health. The internet allows that connection and it is real, powerful, empowering and often more informative than any doctor can provide in a 10 minute visit.

The leaders of this new revolution are you, me and your neighbor.

The Internet and social media is leading a form of health management self-service that is still small today by most standards but will grow to be a large and a very disruptive force. There is an official term for this and it is called Health 2.0.

Healthcare whereby patients have the information they need to be able to make rational healthcare decisions (transparency of information) based on value (outcomes over price). In the Health 2.0 paradigm, everyone in the healthcare process is focused on increasing value for the patient.

We will move more into the semantic web and this consumer led movement clears the way for collaborative groups to join together through enabling technologies to find, share and combine information. The notion of the wisdom of crowds and crowd sourcing are concepts that have yet to really take off in health care, but combine the idea of the semantic web and crowd sourcing and you have the beginnings of a grassroots-led populace as a driving force that can have an impact on managing health and more specifically a disease or condition.

Forrester Research analyst Jeremiah Owyang has written about the future of the social web and talks about the 5 different eras of social media.

The Five Eras of the Social Web:

1) Era of Social Relationships: People connect to others and share
2) Era of Social Functionality: Social networks become like operating system
3) Era of Social Colonization: Every experience can now be social
4) Era of Social Context: Personalized and accurate content
5) Era of Social Commerce: Communities define future products and services

The change that I foresee, which will have the most impact on health care is that of colonization and context. Where the collective is bonded together by enabling technologies, theme, cause or condition and they find, share and combine information to support each other without the need or aid of an institution.

I think this type of social functionality and social commerce will have far-reaching impact on the health care industry. The current reform and policy work is forcing function and is really an acknowledgement of a long standing problem that translates technology into process efficiency — wringing waste from the system. However, it doesn’t look like it will have a measurable impact on improving care.

Instead, companies will have to begin to face up to the fact that the era of “consumers” simply consuming what they create is nearly over. The tables have turned and companies will begin to deliver what you the consumer actually want and need. This is of course already happening and has been going on for quite some time in software development and other industries. In doing so, I think it will begin to apply to how people self-diagnose, treat, and use information to manage their health and condition; the products they choose, down to how, when and why they see a doctor.

Amy Tenderich of Diabetes Mine is on the leading edge of this in her role as a leading Health 2.0 expert and Patient Opinion Leader for the diabetes community. The community and those on the periphery look to her and respect what she has to say. In some cases, I believe that she is more trusted to her readers than a doctor. She also recognized very early on in the Health 2.0 movement and that she could have a voice and an impact. She started a design contest that has created energy and movement in the diabetes blogosphere while also bringing good consumer product design to medical devices.

The Outcome

Take this idea a step further along with an increasingly evident power shift from organizations to individuals and subsequently communities and the scenario that I see developing is an energized group of people with a particular condition or affinity inflicting real change at a grassroots level. Combine the need for personalization, Health 2.0 advocacy, the semantic web and enabling technologies such Open Social, Google Friend Connect and Facebook Connect and crowd sourcing capabilities and it is easily within sight that communities can and will collectively develop ideas, use cases, preferred specifications and even designs that would serve as next generation products that would meet the exact needs of the communities.

The next step is this community coming together as a powerful semantic disease condition co-op and using their collective influence, power and force.

How could this manifest itself? I see a few simple ways:

  • Develop and license community designed “product” to a company and use that company as a manufacturing arm for the product they designed. The company gets a licensing fee and the community gets a royalty of the sales that goes back to participating members.
  • Development of a Non-Governmental Organization NGO such to sponsor, lobby and develop mechanisms to conduct independent research outside of institutions for cures to common chronic diseases, subsidizing care and cause related efforts.
  • New interoperable and social application development to manage health and chronic disease.
  • Set pricing for products and services.
  • It’s the ultimate opportunity cost situation. What will manufacturers have to give up in order to gain?

What will the impact be to providers and payors? I think there are some questions that don’t yet have answers, but I do think there is significant interest to preserve the system in place, but I also think this could be the revolution where the institutions will have to adapt to the groundswell rather than the consumer adapting to the institution. Or, in the least, there will have to be some middle ground found to equalize the current system and satisfy the collective. People really don’t like insurance companies.

When I think of Connected Health, the above scenario is what I think of, which leaves the groups in the “reform” debate today, well, not very connected.

***A big hat tip to Jeremiah Oywang who provided the insight from the Future of the Social Web for me to piece together my thoughts on the groundswell I think will be coming with consumer health care.
| www.jlefevere.com | www.thedigitalstrategist.com |

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  2. Marta Terry said...

    I find this social philosophy, or rather, social media philosophy, on its potential as a means of healthcare management media very refreshing. I think it’s more than a prediction. It’s probably prophecy and this means a boom on both industries if it pulls through. Even now, we are slowly realizing these predictions through various innovations in digital and social network marketing and commerce and it’ll do you no good if you let your business fall behind. This is a great insight into the future. I hope you create more of these in the next few months.

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  4. jenniffer said...

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