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Health Data HIT Patients

All Over the Map: Patient Access to Clinical Lab Information

Last September, the Department of Health and Human Services introduced an amendment to the CLIA Program and HIPAA Privacy Rule: Patients’ Access to Test Reports. The rule proposes that patients have unfettered access to clinical lab test reports upon request. While hospitals, clinical labs, and clinicians say they support the proposal, implementation may have its share of problems. Added costs, new processes, privacy protections, and training of lab personnel would be required to comply with the rule.

If the federal rule is adopted, it would override the current model which provides authority to the state health information exchanges who determine accessibility rules. Today, patients’ access to clinical lab information is determined by the states. The rules are, literally, all over the map. I spent the afternoon building a US map in Powerpoint of patient lab data accessibility rules thinking that I would be able to find a rational pattern across the country.

I made a few presumptions.

  • Do states with strong medical lobbies only allow reports to go the the medical provider?
  • There are a cluster of states in the Mid-Atlantic (DC, DE, MD, NJ, WV) that already allow patients access to lab data. Has the “open health” movement in DC had any influence on policies in neighboring or nearby states?
  • Do states that have large health systems (like Kaiser Permanente in CA, OR, WA, DC, MD, and VA ) with patient portals that share data with patients already have a consistency in policies across states?
  • Is there an alignment of data accessibility policies between “blue” states and “red” states?
  • Is limited accessibility by patients aligned with strong statewide tort reform and medical malpractice caps?

The answers, for the most part are, “not necessarily.” In politics, it is a mistake to look for rational patterns. Politics aside, looks like the same goes for health care.

This post originally appeared on DrChrono’s Blog. 

Categories
Data Viz Health Data

Really Touching Data

houseofsweden

Opened in 2006, the House of Sweden is a stunning contemporary building that houses both the Swedish and Icelandic Embassies in Washington DC’s Georgetown. The front of the building, comprised of a towering glass facade, provides visitors with a full-scale view of the clean lines of the interior architecture and the workings of the occupants. The four storey building was designed specifically to foster an atmosphere of positive and creative cooperation. The architects envisioned unusual features in an embassy — a combination of openness and transparency.

The building’s architectural elements translate into the technological approaches of Sweden more generally (i.e., their influence in the Open Source movement). Additionally, the spirit of the relationship between technology and medicine is captured beautifully in the Virtual Autopsy Project, an academic-industrial partnership that led to the development of a new commercialized product called the Sectra Visualization Table. In early 2010, the Embassy hosted an exhibit of home-grown technologies that I was lucky enough to see when I was biking around Georgetown and stopped in to check out the exhibit hall.

A dining room table-sized touch screen (basically a giant iPad) obscuring a giant CPU with plywood and tablecloths (this was a prototype) allowed users to interact in with 3-D images generated by CT and MRI scans. Developed at Sweden’s Center for Medical Science and Visualization, the table demonstrated how visualization can serve medical education, screening, and diagnostics.

While a rite of passage for a first-year medical student is a cadaver dissection, the availability of virtual cadavers may enhance opportunities for investigation and thankfully limit the time a student has to withstand the odor of formaldehyde in a dissection lab. The Swedish research team has also demonstrated the potential of touchscreen technologies in clinical care, especially in specialties like cardiology, neurology, surgery, orthopedics, and veterinary medicine. As touchscreen devices reach ubiquity in clinical medicine, there is a world of opportunity for developers of these tools and and expanding toolkits for their users.

Anders Ynnerman, one of the researchers who developed the table, in a recent TED Talk, gives a history of the Virtual Autopsy Table and samples some of the applications.