#BlueButton on #FHIR – Escapades as an Entrepreneur-In-Residence at CMS – #Health2STAT

Entrepreneur-In-Residence at CMS

Building the next generation of BlueButton Platform for Medicare Beneficiaries. I am building BlueButton on the open source HL7 FHIR Platform. This will create a RESTAPI with standard structured Data formats that will enable 50+ Million beneficiaries to connect their health information to the applications, services and research programs that they trust.

This evening I was presenting about my work at #Health2Stat in Bethesda (Thursday August 20th, 2015).

Here is the presentation from the evening:

via WordPress http://2.healthca.mp/1NpcCef

The Future of Health Care is not with the Reformers

It has been a fascinating couple of weeks. A trip to Toronto to attend HealthCampToronto and then present at Medicine 2.0 was a great experience. Hearing @ePatientDave kick off the conference was inspiring with his call to "Gimme My Damn Data." As always Dave gets to the heart of the issue in Health Care. Health Care is something that is down with us - not done to us. This is a message I want to promote as part of HealthCamp.

This line of thinking was further reinforced this week when I attended a showing of "MoneyDrivenMedicine" put on by Baltimore's Action Film Series. One of the hidden gems in the movie was a comment from one of the doctors that: "Informed and Engaged patients make more frugal choices." In a system that is currently driven by Pay for Quantity this is a way that we can all have an impact on our own health and on the surging medical inflation. More medicine does not automatically mean better medicine. Indeed analysis of Medicare spending across the country proves that higher spending doesn't mean better outcomes. In fact it can mean the opposite.

I frequently listen to C-Span and throughout the summer the airwaves have been pre-occupied with HealthCare Reform. However, the reason that I titled this post "The Future of Health Care is not with the Reformers" is because the the risk we face is that the entrenched positions lobbying Washington will limit the extent of real Health Care Reform.

So what do we do?

The Future of Health Care Reform is not with the Reformers in Washington - It is with each and every one of us.

We can choose to abdicate the responsibility for reform to Washington, or we can make the commitment to get engaged in managing our own health.

As @ePatientDave proves by his actions getting engaged leads to better outcomes. When our health is on the line we can be a critical source of analysis that we can share with our physicians. Research being conducted by members of the PatientsLikeMe site are proving this.

So, as we prepare for the next HealthCamp event which is taking place in Oakland on Monday October, 5th (HealthCampSFBay) at Kaiser Permanente's Garfield Innovation Center, Let's consider how we can each make important micro-choices that support our long term health and well being.

What sort of choices could we make?

• We could do as @Doc_Rob did and engage colleagues by Email
• You could do as @JenSMcCabe did at Medicine 2.0 and coerce an audience in to an act of micro-fitness
• Next time we are at the Doctors ask them if they accept questions by email, or would review your Personal Health Record if you were to give them access
• If you don't have a Personal Health Record, you can take 30 minutes and sign up for a PHR at Google Health or Microsoft HealthVault
• You could pick up a Blood Pressure Meter from Amazon, or your local pharmacy, and use a service like bloodr.com to keep track of your readings and share this with your doctor at the next visit
• Take the stairs between floors instead of the elevator at your office
• If you have an iPhone, check out the AppStore for mobile health applications, like those from Polka, that might help you manage your health while you are out and about
• Take a break during the day to stretch your legs and also get a break from the stress.
• Un-SuperSize those fries

I am sure you can come up with many, many more "micro-choices." (You can always add your ideas in the comments below)

None of these actions require an Act of Congress, but cumulatively they all can make an impact on our long term health and wellness.

Yes, the future of Health Care is not with the Reformers in Washington - it lies in our own hands by each of us stepping up to take more responsibility and by getting more engaged in managing our health.

The future of health is Participatory Health Care. Are you ready to participate?

Consumer Empowerment, Semantic apps and consumerism at #med2

Real-time on the fly blog notes from Medicine 2.0 (#Med2)

I am looking forward to the Consumerism and empowerment session here at Medicine 2.0. Given that many of the challenges to modernizing healthcare are cultural rather than technical Social Networks have a great role to play in bringing people together.

Paula Hucko of HSAGlobal leads off. In Canada HSAGlobal works through Telus Healthcare solutions.

Trends:

• Rising Health Cost Burden is unsustainable
• Changing perspectives - move to wellness
• Enabling Technologies

Jen McCabe highlighted the "Silver Tsunami" where the age profile of the population is fueling the crisis on the demand and supply side of healthcare.

Mobile Telephony/data is driving change.

Text messaging is being used as a clinical intervention.

Smoking. Weightloss, exercise.

Needs to be two-way one-way doesn't work. SaaS model - reduces barriers to adoption.

STOMP - Smoking Cessation is live in New Zealand. Proving to be effective. 4,000 users. Works for younger target audiences.

TELUS in Canada use for employees. Smoking Cessation for employees. 17% quit rate after 12 weeks. Versus 4% for other programs.

MEDgle - Semantic Health Applications

MEDgle Semantic Health Catalyst API.

JJim Yong Kim - Not about finding new treatments the rocket science is in health and health care and HOW we DELIVER it.

Clinical Decision Support is seen as the key. The medical brain.

CDS1.0 - challenges include personalization and volume of information and multiple unsynchronized systems.

CDS2.0 - The semantics of health/ the semantics of us

MEDgle Catalyst is their semantic API.

Enables people to build applications and connect with other data streams.

Help people understand their options. Without understanding their can be no rational decisions.

Understand the consequences.

CDS2.0 is to help patients, providers, nurses.

eg.

• Differential diagnoses
• Diagnostic suggestions
• treatment options
• personalized analytics
• integrates with CPT/ICD9/10

Google, Amazon, Ebay, Twitter, Facebook have transformed the web though APIs. We need APIs for Health.

HealthyByte uses MEDgle API to filter health related stories.

Personalized Medicine is based on who we are. Genomics comes in to play.

Trevor Van Mierlo, CEO Evolution Health

Good intentions and bad investments: eHealth and the reality of market forces.

There is a law of attrition. Sustainability requires results.

Healthcare is:

• Personal
• Complex
• Revenue-based

Bottom line - You can't just build and deploy. You have to continually refine and change to keep levels of continued adoption high.

Mark Fam - Deloitte - Canadian Health Consumer Survey

2009 Survey findings.

16% of canadians participate in Health and Wellness programs. 56% willing to do so at no cost.

47% diagnosed with one or more chronic disease. 71% say they comply with treatment regimen.

29% consumers interested in Personal health coach and 24% a care coordinator.

20% seek information on quality and service scope. Canadians largely trust their medical providers.

54% concerned with information privacy.

61% are interested in a PHR provided by their doc, hospital or government. 40% v interested.

42% believe quality varies across the health system.

8:1 consumers believe quality varies widely across physicians.

Over 46% would use walk-in clinic vs waiting for a doc appointment

47% take prescriptin meds. 29% don't understand risks of those meds.

68% fill prescriptions. 80% take their meds. 1 in 4 forget to take meds.

Quality, faster access, improved convenience are drivers.

25% use alternative health services.

28% assist a family member or friend. 44% feel it beneficial to have access to PHR for person they assist.

43% of CA give health system a grade A or B. 3% give system an A.

CA people believe 32% of health spending is wasted.

CA People support expanding community care programs. Third most supported health reform.

Q and A session

Any research on incentives?

Personal note: It goes to the fact that we are inherently lazy. We need to provide easy, no brainer interfaces and data feeds so the PHR does the hard work of bringing in data. Vast majority of people will not adopt PHR's if they have to manually input most of the information. At very least PHRs should allow fax input and possibly OCR of captured images to help populate PHR.

Health gets on the Interactive Radar

I wish I had made it to SXSW - and not just for the parties! It seems that Health is hitting the radar of the thought leaders in the Web community. It cheers me to see that others are thinking along the same lines. I see a natural affinity between the Personal Health Record (PHR) and Data Portability. Same problem - different data sets - Same owner.

Catch a Clue!

One book that had a profound effect on my thinking was the Cluetrain Manifesto - The End of Business As Usual. If you haven't read it do yourself a big favour and go read it - TODAY! The book is available in its entirety online to read or you can buy it at Amazon.

Doc Searls was one of the original authors of the Cluetrain Manifesto and he has produced a set of slides to bring the meme up to date. Once again the result is a deeply provocative and thought provoking assessment of where we have come from, where we are and where we are heading. Follow the link and go read the Cluetrain @ 10.

Even the Personal Health Record (PHR) gets a mention on slide 36. I am a firm believer that the PHR is closely aligned with the Data Portability movement - My data, just a different subset with critical privacy controls surrounding it.

Blogging with courage

Susan Mernit's blog is always on my must read list. Her latest post on "Blogging with courage, aka losing the habit of holding back" really struck a chord with me. You see, I write a daily blog for AOL. It appears internally  at 2.open.aol.com and I also work for a Health Care company, CareFirst.  The two roles give me a fascinating insight. My challenge is always to find ways to cross-pollinate ideas.

At CareFirst I get involved with IT Strategy and see the potential to revolutionize how we engage with our customers if we adopt some of the tools and techniques from the Web 2.0 world. This will not happen unless change is forced. It is too easy to sit back and depend upon the tried and trusted methods. We have to be brave and experiment.  

I have been coming to the realization that as bloggers, I believe we have a duty to share a little piece of ourselves when we write. That is why Robert Scoble is such a compelling read as well. 

So, Susan, thanks for bringing these thoughts in to focus for me. I can't stay quiet if I want to see change happen. I have a duty to voice my opinion, share my ideas and encourage change. 

I am also one of the people that have joined the Data Portability work group. I have been a big advocate of OpenID since the early days and was delighted when AOL took the step to OpenID enable every AIM screen name.  What really attracted me to the Data Portability work group  is the potential for it to change the implementation of the Personal Health Record (PHR) for the better. The PHR is of vital importance to each of us. Its importance will grow as more of our health is monitored and recorded electronically. It absolutely should be something we as individuals control. The PHR is bigger than any one company, even Google or Microsoft. I firmly believe that Data Portability is part of the PHR solution.  The mechanisms promoted in Data Portability provide the basis for us each to control who can access what parts of our PHR.