Colleague in patient empowerment Susannah Fox e-mailed me this question and so we thought we’d start one.

Jay Parkinson, MD, linked to a discussion happening on Digg in his blog. E-patients is also hosting an informed discussion on their blog.

Is it cliche to say that this is evolutionary, not revolutionary? I think it’s of benefit to patients and our profession that a dialogue has started around moving health care data in a standardized way to a place where people can aggregate and do things with it to improve their health. A year or two ago, it was hard to think about a standardized extract of a medical record that you could send from an EHR system except in very specialized situations. Now you can do with several partners, Google being the most recently announced option.

I didn’t even think about writing a special post about it, even though I thought, “Cool, this work will support the ideas I am exploring with the California Healthcare Foundation, that patients can be involved and active in their care, across health environments (health system, work, play).” So rather than writing about it, I just incorporated the possibility into the work we’re already doing, which is great.

I think of privacy as a state of being that allows a person to feel comfortable seeking health care regardless of the issue. This is a good place to be, and when that state of being doesn’t exist, people will seek it out, even if it means not seeking needed care, which could be devastating both to patient and health system. At the same time they seek comfort, they also want to build confidence in their ability to manage their health by having as much information their care as possible. In systems where patients have good access and trust, the care is better, and it feels great (and is great) to provide and receive care in that setting. Both things are important, we should not sacrifice one for the other; every patient deserves to achieve their life goals through optimal health.

Welcome back to an experiment - posting a potential project on this blog to get input, in preparation for funding in the future. In several previous posts on the topic of hypertension management, I have laid out some of the gaps in care, and here is a visual that shows how this could potentially be put together in a pilot project with multiple partners.

In order:

1. A Health Risk Appraisal, to help identify untreated or unaware hypertensives (no primary care visits in the past 12 months is significantly associated with untreated state)
2. Electronic Health Record, that receives HRA data, and records target blood pressure
3. Patient access, via messaging and labs, for patient and family involvement in care (the key intervention here)
4. Biometric monitoring
5. Social Media/Health 2.0 - I have not yet found a social network for blood pressure - to compare targets, medication use, promote adherence - I will post on this on its own
6. A personal health record system that receives standard-encoded data (e.g. CCR) to consolidate the data and send summaries back to the provider
7. Purchaser/Employer/Health Plan design and programs to support care in the workplace
8. Pay for performance, blood pressure coming to California’s program in 2009 (not a large proportion of reimbursement, but could be the basis for funding a pilot program

You may look at this and think about a parter or service that could fill each gap. Feel free to comment on ideas and organizations that are or interested in doing this. I will post the current A3 project plan tomorrow to give a sense of timeline. We are hoping to get some interested partners together in June/July to put together the right subset of this ecosystem (we can’t do it all) moving forward.

In addition to the partners mentioned above (provider, consumer group, employer, health plan, technology provider, Health2/Web2) we will also add clinical champion for the condition we’re studying, hypertension, which won’t be me - I’m championing patient and family involvement through health information technology (of course :)).

• E-Health Europe :: Continua promises products by year end - Interoperable biometric devices? Just in time.

By request of some (one) of my readers, I am going to try posting individual links in a single link per post, rather than 5-6 links per. This makes it easier to forward on, and I disk space is cheap, right?

I learned about this at the CCR workshop. The CCR accomodates elements of this, but CMS has not endorsed it yet as a standard.

AMCP.org - Comments on Standard SIG - The NCPDP was working on the standard for Med Sigs - a little background

May 15th through May 18th:

• CCR Product Compatibility List — AAFP Center for Health Information Technology - Adoption list of CCR - not up to date, but gives a glimpse of who has been involved.
• Montana Healthshare - Montana organization to use CCR to improve population health
• Solventus CEND/PHR - A reference implementation of a PHR using CCD, developed by Stephen Waldren, MD and David Kibbe, MD
• PDF Healthcare - A technology platform for enclosing historical documents - can contain a CCR
• SourceForge.net: CCR Acceleration Resources Project - The XSLT transofrm from XML -> HTML for CCR
• www.ccrstandard.com - Continuity of Care Record (CCR)Standard — Resource Site _uacct = “UA-2242673-1″; urchinTracker(); - Home base for CCR
• “I hope that some day you get your wish” - "Medicine has a 100% failure rate" - a discussion of physicians in information technology.
• The WETA Guide to Fine Dining | WETA TV 26 - A nice series on DC treasures
• The Health Care Blog: PODCAST/CONSUMERS/TECH: Interview with Joseph Kvedar, Partners’ Connected Health guru - Information about ConnectedHealth and the EMC pilot they are doing

• AHA - Trendwatch - Absenteeism and Presenteeism in the Workplace - The American Hospital Association also weighs in on lost productivity due to chronic illness. Their analysis is based on the Goetzel 2004 paper

• Health and Productivity Among U.S. Workers - Another analysis of the impact on productivity on illness. This is more general, and also refers to the Goetzel study published in 2004

• Employees to get an online checkup - The Boston Globe - An employer and technology company and health care provider - in MA, who have also determined that hypertension is worth looking at