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AAFP Opposes Direction Of Federal Patient Data Access Efforts

Posted on April 4, 2018 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

Not long ago, a group of federal agencies announced the kickoff of the MyHealthEData initiative, an effort designed to give patients control of their data and the ability to take it with them from provider to provider. Participants in the initiative include virtually every agency with skin in the game, including HHS, ONC, NIH and the VA. CMS has also announced that it will be launching Medicare’s Blue Button 2.0, which will allow Medicare beneficiaries to access and share their health information.

Generally speaking, these programs sound okay, but the devil is always in the details. And according to the American Academy of Family Physicians, some of the assumptions behind these initiatives put too much responsibility on medical practices, according to a letter the group sent recently to CMS administrator Seema Verma.

The AAFP’s primary objection to these efforts is that they place responsibility for the adoption of interoperable health IT systems on physicians. The letter argues that instead, CMS should pressure EHR vendors to meet interoperability standards.

Not only that, it’s critical to prevent the vendors from charging high prices for relevant software upgrades and maintenance, the AAFP argues. “To realize meaningful patient access to their data, we strongly urge CMS to require EHR vendors to provide any new government-required updates such systems without additional cost to the medical practice,” the group writes.

Other requests from the AAFP include that CMS:

  • Drop all HIT utilization measures now that MIPS has offered more effective measures of quality, cost and practice improvement
  • Implement the core measure sets developed by the Core Quality Measures Collaborative
  • Penalize healthcare organizations that don’t share health information appropriately
  • Focus on improving HIT usability first, and then shift its attention to interoperability
  • Work to make sure that admission, discharge and transfer data are interoperable

Though the letter calls CMS to task to some degree, my sense is that the AAFP shares many of the agency’s goals. The physician group and CMS certainly have reason to agree that if patients share data, everybody wins.  The AAFP also suggests measures which foster administrative simplification, such as reducing duplicative lab tests, which CMS must appreciate.

Still, if the group of federal organizations thinks that doctors can be forced to make interoperability work, they’ve got another thing coming. It’s hard to argue the matter how willing they are to do so, most practices have nowhere near the resources needed to take a leading role in fostering health data interoperability.

Yes, CMS, ONC and other agencies involved with HIT must be very frustrated with vendors. There don’t seem to be enough sanctions available to prevent them from slow-walking through every step of the interoperability process. But that doesn’t mean you can simply throw up your hands and say “Let’s have the doctors do it!”

Dallas Children’s Health and Sickle Cell Patients: Cobbling Together a Sound Solution

Posted on June 23, 2016 I Written By

When Carl Bergman isn't rooting for the Washington Nationals or searching for a Steeler bar, he’s Managing Partner of the last dozen years, he’s concentrated on EHR consulting and writing. He spent the 80s and 90s as an itinerant project manager doing his small part for the dot com bubble. Prior to that, Bergman served a ten year stretch in the District of Columbia government as a policy and fiscal analyst, a role he recently repeated for a Council member.

Sickle cell anemia (SCA) is a genetic, red blood cell condition, which damages cell walls impeding their passage through capillaries. Episodic, it is often extremely painful. It can damage organs, cause infections, strokes or joint problems. These episodes or SCA crises can be prompted by any number of environmental or personal factors.

In the US, African Americans are most commonly susceptible to SCA, but other groups can have it as well. SCA presents a variety of management problems in the best of circumstances. As is often the case, management is made even more difficult when the patient is a child. That’s what Children’s Health of Dallas, Texas, one of the nation’s oldest and largest pediatric treatment facilities faced two years ago. Children’s Health, sixty five percent of whose patients are on Medicaid, operates a large, intensive SCA management program as the anchor institution of the NIH funded Southwestern Comprehensive Sickle Cell Center.

Children’s Health problem wasn’t with its inpatient care or with its outpatient clinics. Rather, it was keeping a child’s parents and doctors up to date on developments. Along with the SCA clinical staff, Children’s Chief Information Officer, Pamela Arora, and Information Management and Exchange Director, Katherine Lusk, tackled the problem. They came up with a solution using all off the shelf technology.

Their solution? Provide each child’s caregiver with a free Verizon smartphone. Each night, they extracted the child’s information from EPIC and sent it to Microsoft’s free, vendor-neutral HealthVault PHR. This gave the child’s doctor and parents an easy ability to stay current with the child’s treatment. Notably, Children’s was able to put the solution together quickly with minimal staff and without extensive development.

That was two years ago. Since then, EPIC’s Lucy PHR has supplanted the project. However, Katherine Lusk who described the project to me is still proud of what they did. Even though the project has been replaced, it’s worth noting as an important example. It shows that not all HIE projects must be costly, time-consuming or resource intense to be successful.

Children’s SCA project points out the value of these system development factors:

  • Clear, understood goal
  • Precise understanding of users and their needs
  • Small focused team
  • Searching for off the shelf solutions
  • Staying focused and preventing scope creep

Each of these proved critical to Children’s success. Not every project lends itself to this approach, but Children’s experience is worth keeping in mind as a useful and repeatable model of meeting an immediate need with a simple, direct approach.

Note: I first heard of Children’s project at John’s Atlanta conference. ONC’s Peter Ashkenaz mentioned it as a notable project that had not gained media attention. I owe him a thanks for pointing me to Katherine Lusk.