Updated on 3/24/2011: I recently met the director of a community health organization A. Toni Young, founder and executive director of the Community Education Group here in Washington, DC. She has big dreams for harnessing the power of her clients’ health data but few resources to make the dreams come true.
I told her a bit about the Community Health Data Initiative, the Health 2.0 Developer Code-a-thons, and other examples of geeks helping out wonks. I realized that, while I track the field and get to attend all these cool events (and even serve as a judge for one health app challenge this spring), I don’t necessarily know many people on the ground.
What advice would you give to her? What resources would you recommend? Most immediately, are there any meet-ups or code-a-thons happening in the DC area this spring where she could connect with health hackers?
Here’s the list I started:
The Health 2.0 conference just wrapped up their health developer challenge tour by bringing all the winners to San Diego. Check out the teams who competed.
The DC Code-a-thon would have been a great place to meet some hackers who might be interested in a local project. Check out this article about HealthData.gov including footage of Todd Park, CTO of HHS, talking about the “health data eco-system” at the code-a-thon (and actually, the video also features local health hacker Alan Viars sitting there at the right).
The next big health dev event on my calendar will be held on June 9 at the NIH.
Here are 3 blog posts about last year’s event, including mine:
Making Health Data Sing (Even If It’s A Familiar Song)
Community Health Data Initiative: vast amounts of health data, freed for innovators to mash up!
Making community health information as useful as weather data: Open health data from Health and Human Services is driving more than 20 new apps.
What else can we provide to a community non-profit that serves DC? Who else can I introduce her to?
With her permission I may write a separate post about the specifics of her idea, but until then let’s keep the discussion general. Pretend you just met someone who works in a clinic in your town who is curious about health apps — how would you explain it? How would you help them take their budding interest in health data to the next level?
There are alot of “old school” public and community health organizations that have no idea about the innovations going on. It’s sad but true. We should make sure to get them incorporated in these 2.0 gatherings. That may be one way to get the updates out to their constituents.
While in college I was the student liason at APHA (American Public Health Association) and was also involved in SOPHE (Society of Public Health Education). I still have connections at those organizations and would love to do introductions.
NACCHO (Community Health association) and the ASPH (Association of Schools of Public Health) would also be great to get plugged into these events and they have DC area locations. And also know folks there.
The good news is that Todd Park and his team (who I was really excited to get to know last week and at SXSW) are really energized into taking the health data gospel far and wide. They truly are willing to talk to ANYONE about this and spreading the word. Let me know how I can help.
Thanks, Andre! And thanks for the reminder to ping Aman Bhandari (below).
We all have our work cut out for us in translating the potential of social tools, health data, etc. but I think it’s essential that we are able to do this not only for the early adopter orgs but also for the people who are too busy serving clients to stay up on the latest developments.
Side note: this particular non-profit director has an iPad 2 and an iPhone so she is up to date! In fact she deeply understands how powerful it would be to put this tech in the hands of her employees and her clients – that’s why I think her idea for a health app has potential. She just doesn’t know any code geeks.
As you mention, one of the best things someone like this can do is to come to a health2developer challenge code-a-thon, they are lots of fun and you can actually test out an idea in person!
We designed the code-a-thons specifically so that just about anyone could participate in multiple ways (participant, subject matter expert, observer, challenge sponsor and partner, etc). There is a great gallery of apps and list of challenges on the website that can serve as inspiration:
http://health2challenge.org/
That website is a hub of activity. In the DC area a local hub for people in this space could be the newly formed http://www.capitalhit.com
The other group that would be great to tap into would be the local DC Health 2.0 group:
http://www.meetup.com/DC-MD-VA-Health-2-0/
Any of these folks can help think carefully and *thoughtfully* about what could be built, for whom, why, and scaling/sustainability/testing issues.
Wow, I didn’t even have to ping you – thanks so much! These are fantastic resources.
Anybody can submit a challenge with a monetary or other prize to the Health 2.0 Developer Challenge. There are still a few challenges running and expect more in the run up to Health 2.0 in San Francisco.
WE can discuss the idea in more detail at upcoming HealthCamps in New Haven on 4/2/11 HealthCampCT@Yale (healthca.mp/ct) and in DC on 6/8/11 (healthca.mp/dc)
Thanks, Mark! The DC Health Camp will be an excellent place for her and other DC-based folks to gather. And it’s the day before the big health dev event being held at the NIH – good timing.
Also, Aman Bhandari who works at HHS is one of the great front people for the health data initiative with Todd Park. Let me know how I can make the connection!
Jen McCabe tweeted this answer to my call for input:
“give her my email. :) Also, this needs to be speaker topic at said events.”
I couldn’t agree more. I love seeing speeches by leaders and innovators, but it would be interesting to mix them in with grassroots community leaders and clinicians.
I have a suggestion that pertains to encouraging the ecosystem, not a concrete action for her to take:
PLEASE let’s put open interfaces on all the apps and data sources, so they can mash up and mingle, freely and easily.
Then let nature take its course.
I am working with Kaiser Permanente and Aman to coordinate HealthCampDC with the Community Data Forum.
We will be meeting in early April at the new Kaiser Center for Total Health. I am sure this will come up as a topic as we flesh out themes for HealthCampDC on 6/8/11. My working theme for this HealthCamp is “Vitality through Data”
On a more broad-based level, think we need to recognize and address the existance of silos between developers, health organizations, advocacy groups, patients, etc that challenge the energy and progress in this space. i hope we can collaborate to break these down. This will need to include more than unique moments in time working on developer challenges but a way to marry up people who need partnerships at all ends — across sectors, areas of expertise, geographies, and channels.
Let’s continue this conversation. Agree it’s incredibly important, and, I, too, like Andre am excited and inspired about what Todd Park and Aman Bhandari are doing. Looking forward to supporting this movement however possible.
Mark: Can you share dets on the healthcamp, and info on how folks can get involved? Thanks.
Hi Emily,
Here’s a direct link:
http://healthca.mp/dc/
And yes, this discussion is an example of how important it is to spread the word, which many people on this thread are doing very well. The best I can say about myself that I knew enough to ask my network for input and now I can spread that to the community orgs I meet, and so on…
go to http://healthca.mp/calendar to see upcoming events. The next event is HealthCampCT@Yale School of Nursing on Saturday 4th April, 2011.
Go here: http://healthca.mp/ct and sign up. This is a great event for entrepreneurs and developers to get involved with HealthCare. We also have sponsor slots that start at just $100 to help promote health startups.
What an exciting dialogue! Thank you, Susannah.
Community health organizations are beautifully suited to tap into the “health development craze”! In fact, this is their home turf. These days, the distance between a good idea and its wide acceptance depends less and less on whether that idea comes from a big company or a little kid.
The [formerly “Community…”] Health Data Initiative is one of the most exciting developments in the history of health care in the United States (and, for that matter, anywhere). The potential of App Challenges and Code-A-Thons to do good is only now being unveiled. There may be (Scratch that. There undoubtedly is…) tremendous value embedded within these huge data sets, but the greatest benefit to health care will come from the new, nimble, and refreshingly collaborative competitions that have been sparked by the Open Government Initiative (http://www.whitehouse.gov/open). While the substrate may shift from large quantitative data sets to something else, these new mechanisms for quickly, systematically, and cooperatively developing and vetting innovations comprise an unstoppable force.
I can think of a few zero-cost steps that leaders of community health organizations might take to prepare for the dawn of the National Innovation League season. Here they are, carefully enumerated, but really in no particular order.
Step One:
Gear-up by nurturing the sorts of cross-disciplinary connections that characterize App Challenge teams and judging panels — relationships not yet common in health care. Get to know developers, designers, engineers, entrepreneurs, and others who may not be directly involved in care delivery but have an interest in bringing to health care new perspective and positive change. No one in your neighborhood? Start with Twitter for a seemingly unlimited supply. Meet them for coffee, tea or water (maybe a snack or a walk), and learn about each other’s background. Skype makes distance irrelevant. Describe for them at the highest level what your community and its health care are like. At some point (probably early) in the conversation, they might say something like, “Really?” (As in: “Really? It’s that difficult to access your own records?” or “Really? Patients have to repeat their whole stories to every provider?”). If the “really?” question doesn’t come up within a minute or two, just give it another 60 seconds or so; it will. The point is that a description of health care, in all its complication and complexity, inevitably raises questions — each of which might be an opportunity for safe, exciting, and collaborative exploration, experimentation, and change for the better. Once you’ve helped them understand a clear picture of how things work today for your community, try to understand their background and what it was that made them agree to meet you for coffee (or tea…or water…). You might be downing lattes with a skilled database spelunker. Maybe you’re visiting with a designer who loves and knows how to visually and accurately convey risk. Perhaps you’re meeting with an ethnographer who wants to help you identify why a subset of your community is not engaged in its own care. Say your colleague-to-be is an artist who can bring beauty to an otherwise lifeless experience. Whatever your pairing may be, co-create the union of your “Venn diagram” – where do your interests and passions intersect? That intersection might be the provision of better access to better resources for diabetes management (http://www.diabetesmine.com) [this and other links are just provided for ideas], designing pathways to health & wellness (http://www.pmri.org), establishing a farmers’ market outside your local hospital (http://bit.ly/bKOp1K), creating an app for a mobile device (see: everyone and their respective uncles), discussing end-of-life issues (http://EngageWithGrace.org), reducing the burden of treatment (http://minimallydisruptivemedicine.org/), or capitalizing on recent Affordable Care Act changes (http://bit.ly/ejhI3O)? Whatever the area, by finding a kindred spirit or two and giving yourselves (and your communities) the liberty and latitude explore that new possibility together, you have just taken the first and most difficult step toward tapping into the new health development craze. Simple? Yes, but perfectly true.
Step Two:
Keep doing Step One. (Remember: a team composed only of people who routinely provide health care in the present may be experts only in the present health care routine.)
Step Three:
Stay-tuned to Susannah Fox at http://www.e-patients.net, Todd Park & his team at http://www.healthdata.gov, Liz Rockett at http://www.health2con.com, and any of the many organizations (including http://www.mayoclinic.org) that have hosted or will host Code-A-Thons, App Challenges, Developer Challenges, and the like. Find challenges that are seeking what you might like to develop. If there isn’t one today, there might be one this summer, or next fall. Expect the menu of challenges to grow.
Step Four:
If your project involves mining data or developing apps, dip your toe into the developer challenge pool. Watch teams present and see how the judging works. Speak with folks who have been on teams or participated in judging and get a sense for how inspiring this community can be. Build your own team. Submit a proposal. If you feel like a newbie, join the club.
Finally:
If your idea just doesn’t involve databases or circuit boards, that means you’ve probably happened upon one of the seventeen million ideas that might make health care better and don’t involve databases or circuit boards. No worries! Visit a Challenge venue anyway! You’ll be inspired. As for that idea, please share those ideas in global communities like this one. Implementation of your proposal just might become someone else’s challenge. On behalf of all of us to whom this is new and exciting: Welcome! It’s so great that you’re here. :)
p.s.: Incidentally, and for full disclosure, I have been stuck in the San Diego airport for that last TEN hours…please feel comfortable to reply with something more concise than my multi-paragraph, time-on-my-hands, example. ;)
I thank everyone for this great discussion as I’m learning a lot. I’ve been preparing a talk on self-tracking for the mHealth Networking Conference, and have been looking a lot at how data are displayed and combined into data sets. A few thoughts:
– Data visualization is key. You can have great numbers and great number crunching, but in the end you need to be able to make sense of it.
– We need to rethink health ‘data.’ It’s not just numbers. It’s words, images, video. Some of the most profound self-tracking and community health ‘data sets’ that I’ve come across are Flickr diabetes groups. And a search on ‘weight loss journey’ on YouTube will make you rethink basic BMI tables and body weight data.
I completely agree with the need for cross-disciplinary teams; bring on the geeks, wonks, UX/IA folks, artists, dreamers, etc – I look forward to seeing all of you at HealthCampDC.
Hi Susannah,
I am a fan of the Code-a-Thon and the Developer Challenge and have walked the walk myself; much fun ensued.
My add to this conversation would be , “Think about what you’re going to give in addition to what you’re going to get.”
If your colleague (can you name names?) is involved in health care operations or delivery of services, I encourage them to share the knowledge of how things work, the problems they are solving on a regular basis. Invite enthusiastic developers with a spark of creativity to your space and let them learn by observing.
One unanticipated piece of learning from my own Code-a-Thon-ing that I think was under-emphasized was the value of the leadership process. This may be more significant than the product – how does a developer, health care organization, doctor, nurse, govt organization get in a room and engage successfully? We learned a ton about this on our special day.
The converse of this is that an app without a home or relevance to solving problems could potentially end up in the Health 2.0 graveyard, and no one wants that.
I see in a lot of these discussions the use of the word “data”, almost incessantly. I try to replace that word in my my mind with “people” and see if the conversation still makes sense. If I could borrow from Suze Orman, I’d say, “People first, then data, then things.”
…and how about if your colleague wanted to start the relevance discussion by sharing the problems they would like to solve, right here, or some other open space. I think the anonymity of the request adds to the blurring of focus on solving problems….
Best,
Ted
Ted,
Thanks so much for expanding on your intriguing tweet.
As often happens to me, I got so excited about sharing my question that I couldn’t wait to post it!
I will now go back to my new friend and let her know that a community of helpful people are waiting to hear more about her work, which I can assure you is focused on people, not “data.” Data is just the stuff that she needs to move more quickly and share more easily in order to allow her people to be more effective when in the field and to allow grantmakers to understand the impact her organization is having on the health of people in DC. I’ll invite her to join the discussion, either here or at the upcoming HealthCampDC on June 8.
Yes, I could have waited to post my question with all of the details of her specific project but I would argue that much good has come from posting a general set of questions. We’re talking about broad issues of how community orgs can engage, not just this one example.
Here’s the tweet that has already made my day:
“Didn’t know about these code-a-thons – impressed!” – @pixelsandpills
Connecting people to new ideas and to each other = my raison d’etre :)
Susannah,
Not to worry, believe me I know the delicate dance of “I’d like to post about your experience, can I use your name?”
The extra detail is helpful!
Ted
Anyone have insight on the $19B ARRA investment for the HITECH Act and other incentive programs?
https://www.cms.gov/ehrincentiveprograms/
Hello Everyone and Thank you! This show of support is amazing and thanks so much to Susannah for connecting me with such an extraordinary community of folks! I literally have tears in my eyes and have been running around the office high fiving folks.
Community Education Group is a small not for profit East of the River in SE DC. Here is a link to our site http://communityeducationgroup.org/
If you have a second take a look at the video it will give a sense of what we do, which is primarily venue based (outside) HIV testing of more than 6,500 persons in 2010 and a projected 10,000 in 2011. Each HIV test that CEG administers includes at least 10 pieces of paper associated with the client file, with the average closer to 18 pieces of paper. However, with the approximately 3% of clients (300+ files), we end up with at least 66 pieces of paper as a client is linked to a primary medical home and CEG administers the necessary follow-up.
We are seeking the development of an app using the iPad platform (while remaining compatible with our Microsoft based computer system) for our HIV testing and Linkage to Care teams to reduce the amount of paper in the field.
I see this a 3 or 4 step process; in short we need to be able to do the following:
Data collection – turning all the forms (verbatim) into an electronic format by creating an application based on gathering the existing required data points and variables which will be needed for internal/external reporting
Data gathering- the ability to collect the data and the capacity to get that data for reporting out of the app
Data Transfer – developing a seamless process to submit data in this new format to the government agencies to which we are required to report.
Electronic Signature and Bar Codes – Allow for an electronic signature for informed consent purposes. In particular, one set of forms are bar coded and we would need to address how we could get around the sequencing or apply the sequences we are given.
I am excited about attending both the Code-A-Thon and HealthCampDC on June 8 and thank you again for your enthusiasm!
NERDS ROCK!
Thanks, Toni! And apologies for getting ahead of myself in posting about you before properly introducing you. I hope everyone has a chance to click through to watch the video on your site since it shows the role of paper & clipboards in the field.
When you & I talked about the challenges you face in record-keeping, you not only cited the amount of space that paper takes up in your office, but also how much more friendly it would seem to your clients to be able to use an iPad to fill out forms. That comes through for me when watching the videos.
I’m sure other people will have more questions for you, either here in the comments or at the HealthCamp on June 8. It’s an honor to introduce you to my network of health geeks and indeed NERDS ROCK :)
And I should note that Toni was also a speaker at the White House event on March 11 – here’s the panel she was on:
http://www.youtube.com/watch?v=wdzb7NSw_OE#at=2700
(and yes, I did just figure out how to link to a specific part of a YouTube video – not perfect but better than wading thru the whole 2.5 hours yourself, right? :)
Hi A. Toni Young:
Let me know how I can help. I’m a local health software developer, entrepreneur, code-a-thon participant, and I know most of the folks on this blog stream.
I’ll be in D.C. on Wednesday so I’d be glad to speak with you in person if you have time. Maybe around noon or 1pm?
And yes nerds do rock!
All the Best,
Alan
p.s. my twitter handle is @aviars