First of all, Connected Health is a much bigger idea than the original idea of telemedicine, which was all about laying the painful last mile of technology to finally reach those with the greatest needs to communicate about health.

Connected Health, in contrast, is not about devices, sensors and gadgets. It is about the idea that how people connect with each other has a profound impact on health.

As Nicholas Christakis, author of “Connected”, reiterated in his keynote speech, our connections to each other, probably even more so that our connections to our doctors and nurses, has a measurable impact on our health.

Despite the big idea of connected health, too many of the Connected Health sessions followed the same format:

1. Most of the trillions in health spending is the result of chronic illness which in turn is the consequence of our lifestyle and behavior.

2. There is compelling evidence that connected health can improve quality and reduce the cost of care, referring to proactive care models that coach and monitor patients at home.

3. The only barrier to widespread adoption of a more rational model of connected care that will save our health system from impending collapse is Medicare coverage of remote health monitoring technologies.

This is the same conversation we had six years ago when we introduced the first connected health ideas as part of the Medicare Modernization Act of 2003. Six years later, it seemed like nothing had changed.

In fact, much has changed, and the next few years will be profoundly different than the past six. The fact is, we are all becoming connected in a tighter web of relationships enabled by technology. 300 million of us are on Facebook, maintaining a constant awareness of how our social network is faring. Soon we all will be able to keep tabs on our most important relationships on our smartphones.

When Grandma is also on Facebook, and her friends and family know how she is doing and she knows they still care, do you think there will be fewer crises that lead to hospitalization? I think so.

In a world where we can blog and tweet from an airplane while watching satellite TV, we surely have the tools to create the kind of connection that will improve healthcare. It’s going to happen, not because of policies and reimbursement, but simply because connected health is far better for everyone than isolation.

Nevertheless, I was taken aback by the question. Working one block from Twitter in the South Park area of San Francisco, I had taken it for granted that social media has become part of everyday life. When I tried to describe the idea that sharing more of yourself on the web can make life richer and more interesting, the good doctor looked at me with confusion and maybe a tinge of disgust. Sharing in healthcare is not social, and to a lot of healthcare people, “social media” sounds more like a communicable disease than a great new idea or solution.

Sharing in healthcare has always been, and probably for most of us should remain, an intensely personal and private act. It is not surprising that social media and healthcare haven’t come together, at least not under the auspices of major health care institutions. Despite some forward thinking efforts of a few pioneers like Mayo Clinic, which recently even sponsored a “Tweetcamp”, most of the use of social media in health has come from grass roots efforts as people find information and support from other people who share similar needs, experiences and circumstances.

Sharing through social media is an act of faith that the benefits of being “out there” with your ideas and content will outweigh the risks to your privacy and personal space. Millions of people have already gotten over than hurdle and have determined that social media makes life richer and more interesting. Social media is about people having a conversation online. For many, this already includes health.

Since I didn’t do such a great job in explaining social media at the time I was confronted with the question, I thought I would list the top 10 social media tools that I use routinely and explain why I use them. Some of these tools could have a profoundly positive impact on health, particularly in chronic care, wellness, and prevention, but I will leave that to a different discussion. These are the tools I use personally.

1. Facebook: Facebook is a website that helps you communicate with the people you already know, or at least with people you don’t mind publicly declaring that you know. It is great for sharing photos, videos, notes about your experiences and adventures, parties and get-togethers, books you are reading — things that you find interesting but would never send out in a mass email. Facebook is not really for work. It’s for friends. Although you shouldn’t expect your kids to “friend” you, it can be a great way to keep an extended family connected. You also can keep in touch with people you used to work with or used to go to school with, people in your community, or people you met along your life journey. Without Facebook, many of those relationships would wither and fade away over time. With Facebook, you maintain a constant awareness of your extended relationships and often find a surprising number of ways to reconnect.

2. Twitter: Twitter is for sharing thoughts and ideas and with people you don’t necessarily already know but with whom you share a common interest. These are the people you might want to get to know better in the future. Although there has been much hoopla about sharing trivial or mundane personal details, Twitter has actually evolved rapidly into a professional media. It is a great way to discover new people and professional connections as you cumulate a group that cares what you have to say. If all you have to say is what you had for breakfast, don’t expect to make a lot of interesting new friends. I used to get my news from the front page of Google News (the newspaper subscription is long gone). Rather than news from a front page determined by popularity, I am much happier to see what the people I follow on Twitter are reading and find interesting. Twitter is a broadcast channel, kind of like a modern ham radio. The whole world can hear your messages, and some of them start to tune in and talk back.

3. Meetup: Meetup is a fabulous platform that has been underrated and underreported in the past few years, despite the fact that milllions of events, mini-conferences, clubs and organizations regularly organize, recruit, and connect through Meetup, all over the world. If you want to meet real live people who share your interests, find interesting speakers, artists, or entrepreneurs sharing their stories and talents, or if you want to learn or try something new, look for a meetup near you. There are groups about everything, from semantic web technologies and artificial intelligence to rock climbing and paint dancing. I try to go to at least one meetup on some topic of interest every month, and it has been better than most conferences that I used to pay thousands of dollars to attend.

4. WordPress: WordPress is the leading blogging platform, a content management system that makes it easy to create your own website in a blog format. You can personalize your blog by choosing from thousands of styles and themes, or create your own with just a beginner knowledge of web design. This blog is done using WordPress, and as you can see I created a style to make it look just like my Twitter page. In addition to changing the theme or style, many people have developed free extensions to the functions and features of WordPress through plugins. These extensions and themes together with a thriving open source community makes WordPress an extremely powerful content management system that you can use for just about anything.

5. YouTube: Millions of people use YouTube to discover and share videos. It has replaced television as the primary source of interesting new content that we talk about around the water cooler. YouTube feeds my secret desire to make a movie some day. I have posted a few videos of my own, which are extremely easy to edit and upload from a Mac using iMovie. Get ready for an explosion of real-time video content sharing on YouTube as it gets even easier for anyone with a modern smartphone to shoot, edit and upload short videos without even touching a computer.

6. Basecamp: Basecamp combines the functionality of blogging and discussion boards with to do lists, milestones and file sharing. It is designed and optimized to help small teams collaborate on projects, whether it is organizing a family reunion or developing an iPhone app. Basecamp is famous for not responding to user requests for new features and insisting on a minimalist set of functions. Because of their focus on simplicity, Basecamp is a project management tool that does not require a team a training session to instantly improve productivity and communication. Each project only can be accessed by those people who belong on the project team. Basecamp is a great example of social media tools applied to collaboration online.

7. Slideshare: When I make a presentation at a conference, I like to post the powerpoint file on Slideshare so that the participants can view it and discuss it after and even before then actual presentation. Viewers also can embed your slideshow in their blog, tweet about it, or share it on Facebook if they are so inclined. The presentation format remains the most pervasive way to share and idea and lead a group discussion, and Slideshare is a great way to share your presentations online. It is also a great way to find ideas and discover other the presentations of other people.

8. 3banana: 3banana is the easiest way to take notes online and on your phone and keep them synchronized wirelessly and always handy. I like to jot things down that I want to remember, clip things I find on the web, or draft random ideas that I might want to blog about or share later. I need the fastest and easiest way to get my thoughts and ideas into the system, and know that I can come back to them. With Facebook, Twitter, and even WordPress, you need to have a pretty good idea that you want to share with the world before you start typing. I like to start with 3banana, because every note is private by default, but if I decide to share a particular note I can easily post a private link to it. Every shared note is then the onramp to a conversation because people you share with can leave comments.

9. Blip.fm: Blip.fm is like Twitter for music. You can find just about any song, add it to your channel as a DJ, and stream it right from the web rather than downloading it to your computer. You find songs because they were posted by other DJs, and then you can see what other songs that person was posting. You can follow and cheer other DJs that you like, and DJs that share your taste might start following you as well. It is a great way to discover music by discovering people with whom you share musical taste. The website design is great and it’s a lot of fun.

10. Ning: For most social networking activities, I like Facebook, but sometimes you are part of a private group or club that wants to have a dedicated private network with the same kind of functionality. Ning makes it easy to set up your own private Facebook-like website for your own group. You can use the content management system to design just about any web functions and modules you like, plus you have the ability to administer groups, blogs, friend list, mailings and all sorts of other things that are useful to just about any membership organization.

There are lots of other great social media tools that help you collaborate on documents, review books and restaurants, make and sell T-shirts, and even become a contributor to the world’s largest encyclopedia.

One question I will get from my professional friends is “What about LinkedIn? Isn’t that a social network?” LinkedIn is a place to post your resume, and maybe other people and recruiters will find it. But it isn’t really social in the same ongoing and interactive manner as my top 10, despite some attempt to add social networking features. If you use it once and rarely go back, it is not a conversation. It’s not social media.

Social media is about sharing and discovering, building and enhancing relationships with other people. It has already changed the world, from social life to the political landscape. Since healthcare is such an important institution in modern society, approaching 20% of our country’s economic activity, there is no doubt that social media will find tremendous uses in health as it will in every other field.

This is my current top 10 social media tools. I would love to hear your top 10, as well as your ideas for how to use them.

Matthew Holt, the author of this presentation on Health 2.0, is the founder of The Health Care Blog and the Health 2.0 Conference, an event that has defined a new paradigm for ehealth and brings together a new generation of creative thought leaders. This year, the Health 2.0 Conference will be held jointly with the Center for Information Therapy on April 22-23, 2009 in Boston.

My Reaction to Health 2.0 and the Convergence with Information Therapy:

Health 2.0 makes Information Therapy practical and possible. Health 2.0 is about individuals creating and sharing more of themselves online in a way that improves their own health, the health of others they are connected to, and the health of the community as a whole.

Information therapy is based on the idea that what we think and believe — the content of our minds — can influence our health, either directly or through our behavior. We can change and influence the content of our minds and therefore also our health through information media.

Personalized health, however, is highly diverse, and if we had to design the right information therapy for the right person at the right time, we would never finish the job. So how does Health 2.0 make information therapy possible?

The needs in health care are complex, personalized, and ever changing. How can information therapy derived from a scripted template ever fully address them? Without Health 2.0, the greater the number and diversity of people with health needs, the more infinitely complex the situation becomes.

Health 2.0, on the other hand, changes the information therapy equation. The participants are co-creators, selectors, navigators, recommenders, and reviewers of content, so the more people involved and the greater their diversity, the more possible it is to meet an ever greater diversity of needs.

While some traditionalists might argue about the need for evidence-based information, the reality is that rich and diverse Health 2.0 communities are enabling an acceleration of evidence gathering. In the social media world, randomized controlled trials or A/B and multivariate experiments on the impact of information and ideas on user behavior are conducted every day.

This same quantitative and experimental methodology of the modern Web 2.0 Internet, when applied in Health 2.0, will start to advance our knowledge about information therapy, so that we may discover how the right information, at the right time, and in the right way can truly improve health.

Health 2.0 as a new data source – Presentation Transcript

1. User-Generated Healthcare & its potential as a data source research vehicle User-Generated Healthcare NCVHS 26 February, 2009 Matthew Holt Founder/Author, The Health Care Blog Co-Founder, Health 2.0 matthew@health2con.com
2. Media sources people trust User-Generated Healthcare Source: Globescan/BBC/ Reuters 2006
3. User-Generated Healthcare is Web 2.0? What the hell
4. User-Generated Healthcare
5. User-Generated Healthcare
6. eThis, That & The other vs. Web 2.0 WWW, born 1994-5 Web 2.0, nee. 2005-7 publishing, searching, uploading, sharing, reading collaborating, searching • Content Management • Social networks – Syndicated – Blogs, microblogging (hi, Tweeps!) – Subscribed – Wikis User-Generated Healthcare – Internally created – Forums, Groups, Discussions – Integrated from data sources – Video/content sharing • “Webmaster” regulated • Sharing Tools – Institutional publishing – Community policing standards – Posting guidelines – Prescribed branding • Dominant letters • Dominant letters – r, z, x, 2.0 – e, later i – Dash optional – Periods, but no vowels allowed Adapted/stolen from Gale Wilson-Steele, CareSeek; Jane Sarasohn-Kahn
7. Web 2.0: O’Reilly’s Core Competencies • Services, not packaged software, with cost-effective scalability • Control over unique, hard-to-recreate data sources that get richer as more people use them User-Generated Healthcare • Trusting users as co-developers • Harnessing collective intelligence • Leveraging the long tail through customer self- service • Software above the level of a single device • Lightweight user interfaces, development models, AND business models Source: Tim O’Reilly What is Web2.0 9/2005
8. What the hell ? is ill st User-Generated Healthcare u yo g? e r rin A de n o w
9. What is “Health 2.0” Matthew Holt’s best guess at the constituent parts • Personalized search that finds the right answer for the long tail • Better presentation of integrated data • Communities that capture the accumulated User-Generated Healthcare knowledge of patients and caregivers; and clinicians • Intelligent tools for content delivery And just maybe…. Patients (really!) in charge of their own care?
10. Health 2.0: User-Generated Healthcare Social CONTENT Networks User-Generated Healthcare Search Tools TRANSACTION
11. User-Generated Healthcare Personalized search
12. User-Generated Healthcare Intelligent Communities
13. Intelligently presenting content User-Generated Healthcare
14. Highlights from the 1st Edelman Health Engagement Barometer 7 in 10 adults demand engagement… especially for personal health issues that matter most to them • 22% of the population are Health Info-entials • Most frequently accessed channels of health information: User-Generated Healthcare – Conversations with friends/family (69%) – Conversations with my doctor or healthcare provider (65%) • Social media is more credible when coupled with health expertise – Top social medium: Health expert blogs (86%) – Other most credible media include personal blogs, social networking sites, video-sharing sites, and Wikipedia Source: Edelman Health Engagement Barometer, survey of 5,000 consumers in USA, UK, France, Russia, China.
15. Search & Online Communities + User-Generated Healthcare
16. Emergence of Consumer-Focused Tools • Personalized • Analytical User-Generated Healthcare • Supporting Decisions • Enabling Transactions
17. Health 2.0: User-Generated Healthcare Social Content Networks User-Generated Healthcare Search Tools Transaction Data
18. So now what is “Health 2.0”? Holt’s evolving view of a moving target • Personalized search that looks into the long tail, but cares about the user experience • Communities that capture the accumulated knowledge of patients and caregivers; and clinicians – and explain it User-Generated Healthcare to the world • Intelligent tools for content delivery – and transactions • Better integration of data with content And it’s not a maybe anymore… Patients increasingly guiding their own care
19. A continuum of Health 2.0? User-generated Users connect to Partnerships to Data drives health care providers reform delivery discovery Use of Web2.0 Tools and communities Reforms in payment All the data collected in User-Generated Healthcare technologies for created as part of structures, a combination of a, b & patients and Web2.0 in health care, transparency, and c produces leaps physicians to which then becoming technology produce ahead in the process communicate and connected to the changes in delivery of care and eventually investigate without system (i.e. creating structure and process in drug and procedure connecting to the appointments, around chronic care discovery. health care system conducting treatment, excellence transactions, centers for particular managing clinical procedures, etc. events)
20. The Present and Potential of Health2.0 Data drives Ultimate discovery Impact Partnerships to User-Generated Healthcare reform delivery Users connect to Providers User-Generated Healthcare Likelihood
21. Data/Research: Patients’ opinions User-Generated Healthcare
22. Data/Research: Doctors’ opinions User-Generated Healthcare
23. Communities as Research Vehicles User-Generated Healthcare
24. User-Generated Healthcare A Health 2.0 trial?
25. User-Generated Healthcare A Health 2.0 trial?
26. User-Generated Healthcare A Health 2.0 trial?
27. User-Generated Healthcare Individual & Crowd Data
28. Delving into the long tail: CureTogether User-Generated Healthcare
29. Understanding the whole “integrated” patient User-Generated Healthcare
30. Communities as Research Vehicles User-Generated Healthcare
31. User-Generated Healthcare
32. So what should NCVHS & AHRQ do? (how should you spend your $1.1 billion!) • Figure out partnerships • Fund some of these little online patient communities—too important to let them die & it will be cheap! User-Generated Healthcare • Integration, integration, & smart use of big & disparate data sources • Suggest to those with the $17 billion, to reach out to their patients everywhere they are & enforce reporting back