Panel: How do HIEs, EMRs affect patient-physician experience?

BOSTON–Better monitoring and understanding is needed for how EMRs and health information exchange (HIE) impact the patient’s experience of care and best practices need to be shared to improve these technologies, Barbra G. Rabson, executive director at Massachusetts Health Quality Partners (MHQP) reported Thursday at the Health IT: Creating Jobs, Reducing Costs and Improving Quality national conference, hosted by Massachusetts Gov. Deval L. Patrick.

“We are still learning about the positive and negative impacts of EMRs on patient-clinician communication,” said Rabson, adding that physicians should do a better job telling patients about the value EMRs and HIE can provide.

Rabson, along with fellow Massachusetts-based panelists, sat down to discuss the role of the patient in health IT and HIE.

“Without citizen engagement, clinicians’ adoption of health IT may be dead on arrival,” stated John Moore, managing partner, Chilmark Research. Moore cited recent data from the California Healthcare Foundation (CHCF) that only 7 percent of Americans have used a personal health record (PHR).

“Stimulus funding is not enough to move the needle,” stated Moore. A PHR should be personable and engaging to the citizen, according to Moore.

Rabson quoted statistics from MHQP’s 2007 Statewide Survey of Patient Experience with their Primary Care Physicians that a third of adult patients reported that their personal doctor did not always seem to know all the important information about their medical history. MHQP conducts this survey every two years and Rabson was thankful to note that this figure has improved in the 2009 survey, which will be released in May.

Unfortunately, statistics that did not improve were that 40 percent reported that their primary care physician was not always informed and up-to-date about care they received from a specialist and that a third of patients (or parents of child patients) reported that they did not always receive test results from someone in the doctor’s office.

David S. Szabo, partner at Edwards Angell Palmer & Dodge, further parsed down the CHCF data to address security and privacy concerns of PHRs. Szabo stated that 40 percent of the PHR users in the CHCF data were very worried or somewhat worried about the confidentiality of their records and that a mere 4 percent of the respondents cited HIPAA as a reason to be reassured.

“With our regulatory focus, it makes us wonder if we are talking to the patient in the right language to think about the value of regulation,” said Szabo.

Szabo stated that portals operated by covered entities or their business associates are regulated by HIPAA privacy and security rules yet free-standing PHRs will not be covered by HIPAA.

For free-standing PHRs, according to Szabo, the Federal Trade Commission (FTC) has adopted a health data breach notification rule to apply where if there is a breach, you will be notified. According to Szabo, for privacy, the source of information to go to would be state law and the website’s privacy policies where “FTC will strictly enforce privacy policies literally as written.”

According to Szabo, the FTC may apply “behavioral advertising principles” to PHR websites, meaning the “because of your use of a website, the advertising is custom-tailoring to you.” Szabo stated that the FTC has proposed four voluntary principals:
  • Transparency and Control - The consumer should understand and have some measure of control;
  • Reasonable Security and Limited Data Retention - Once data is no longer necesary, they should get rid of it;
  • Best Practices for Changes for Privacy Policies - If a company changes its privacy policy, that should only apply to new data that get enters in not to prior data previously collected; and
  • Express Consent for the Use of Sensitive Personal Information.

Szabo concluded the panel with questions he couldn’t answer but posed to the audience to reflect on: Is our current regulatory and privacy regime sufficient? Should the rules for a PHR company be the same for a HIPAA-covered entity? Would stronger privacy regulation promote PHR adoption or our consumers indifferent?

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