Scribe of Don Detmer’s session; How can government be involved?
Feb 21 2009
Scribe: Mike Lincoln (VA, Utah DBMI)

1. Judy Ozbolt: Should personalized health care include family members and others? We should advocate this is part of health care reform, provide case examples.
2. Permanence of personalized health information: Justin Starren commented that personalized genomic tests have more value being passed from physician to physician than traditional labs such as a serum potassium. The average patient is unable to convey this information (it is too complicated). Susan Grobe proposed that it be downloaded into a PHR on a device that is portable, like an iPhone. Rob Kolodner proposed that genomic data is very permanent, even more so than family history. James Anderson comments that Mayo is so coordinated, but care is very fragmented everywhere else. No one has all the information, nor access to all the possible repositories.
3. Justin Starren comments that re-use of data does not get the same reimbursement code as re-taking of data (ambulatory visit CPT coding, for example, getting only a 99211 as opposed to a 99213 because you didn’t re-ask certain things).
4. Bob Beck and Justin Starren commented that least common denominator health IT solutions may prevail unless there is top-down direction and some kind of incentive or mandate (looking to Rob Kolodner). Judy Ozbolt: need carrots and sticks. Rob commented that we don’t want government to suppress ideas that might otherwise prevail. Mike Ackerman: give the decisions to the government or insurance companies (worse evil?). Rob K. comments that government will only pay if a system is a) certified, and b) has certain functionality. He said the PHR only certifies security and interoperability, functionality is not settled yet. Patty commented that the certification is a “floor not a ceiling”. (again wants to keep innovation possibilities open). Justin S. commented that behavior will trend to some min or max inevitably unless there are large incentives (“carrots”). Don Detmer commented on the importance of a common informatics curriculum. Judy Ozbolt: carrots might include reimbursement for maintaining genetics/genomics and health promotion/self management info. Julie McGowan: CFOs are a big obstacle, CEOs were big promoters of quality and HIT because providers talk to the CEOs. Mike Ackerman suggested patient-centered incentives to use HIT (e.g., your life insurance gives a discount for use of PHR); this would depend on proof of PHR efficacy and cost savings.
5. Patty Brennen – where is expense in the system that we are trying to save – end of life care, extension of med assistance. For next number of years, PHRs will not affect end of life costs/issues. What can we do in informatics for people in last 90 days of life. (Informatics and end of life care). David Bates said the POLST from Oregon is a good patient preference document that could be used. A study showed it would save $40B/year (unpublished study). Rob Koldoner commented on authentication of end-of-life and other patient documents; there is a standard needed here. Having more confidence in patient directives and measuring how often care is conformant to those might help (Judy Ozbolt). Additional patient documents other than advance directives might include organ donor directives, religious preferences (some of this is in HealthVault. Susan Grobe commented about need for developing consent standards and the need to periodically “re-up” the permissions.
6. Joel Saltz raised topic of consent. How should we enable consenting of patients? (a big problem in research institutes). Can the consent be “universal”? There are huge amounts of wasted effort due to conflicting and complex IRB and government requirements. Judy Ozbolt: end-of-life care has a document called “The Five Wishes” for use by families to discuss and reconcile patient preferences.
7. Les commented that costs should be a primary driver for these and other HIT changes. Government might want to be more hard-nosed.
8. Bill Hersh commented that patient choices are often manipulated by companies, and maybe they need counter-detailing.

Main themes:
1. AMIA should define ways that PHR/EHR creativity and functionality be maximized and yet not default to only government mandates, which may stifle some potential solutions. Government should act to roll up, use a combination of carrots and sticks.
2. Working on patient documents, preferences, and consents with appropriate standards would be useful (David Bates); also includes personal health documents such as exercise plan, personal health management for retirees.
3. Education of providers and patients about what they should need in PHR/EHR and how to obtain it. (Bill Stead’s Leadership council is working on this)

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