Health care records should be user-friendly, patients say

Patients want health technology rules to give them more access to their data

Dave deBronkart has a rather unique perspective on the health information technology debate: He's a cancer survivor, “e-Patient Dave” blogger and a believer in the power of technology to improve health care for patients, providers and the government.

“I am a high-tech guy," he said. "And I see what is happening in technology as a big opportunity to benefit patients and reduce costs.”

DeBronkart is one of the founders of a movement to put patients and consumers in the center of health care reform and health IT. He and other advocates are trying to get patient-centric principles into the Obama administration’s upcoming regulations for spending $19 billion in incentives for health information technology. The question is: Is giving more power to patients too big a pill to swallow?

The goals of patient-centric approaches are to give patients a more active role in their care including giving them greater access to their medical data in digital form. Vendors are applying patient-centric ideas to electronic personal health records, systems that store someone’s health history in one place in digitized form. Those systems could eventually be involved in regional and national health information exchanges.

Personal health records, which patients create and use voluntarily, would seem to complement the Health and Human Services Department’s development of standards and policies for certified electronic health records, patient records created and shared by doctors and hospitals. In May, HHS’ Office of the National Coordinator for Health IT (ONCHIT) began drafting regulations to reward providers who show "meaningful use" of health IT.

DeBronkart and others want patient-centric principles included in meaningful use. The goal is to improve patient and doctor decisions and reduce costs and errors by making more data available. That could be in the form of suggested treatment plans based on outcome studies, lists of risk factors that might affect care, and software to search for errors.

“It is really about the information flow. It has to be meaningful to the patient,” said Dr. Paul Grundy, president of the Patient-Centered Primary Care Collaborative and director of health care transformation at IBM. The organization works to promote patient-centered medical homes, in which physicians offer holistic care to patients.

DeBronkart said he believes patients should have access to certified EHRs. Although that access is already permitted under a 1996 law, he said it’s difficult to achieve in practice because of provider resistance. “Just try getting your own records sometime," he said.

“Health IT systems are being designed without enough consumer involvement,” agreed George Van Antwerp, vice president of solutions strategy at Silverlink Communications. “If you want health literacy, you have to give people access to the data and the tools.”

David Wright, executive director of the Institute for Interactive Patient Care, says national health IT regulations ideally would accommodate patients’ desire for better access to data. But Wright is worried about adding such principles to the tight schedule for action on meaningful use by year’s end. “It is probably too late to put it in,” Wright said. His group is focusing on broader health care reforms.

Another key issue is the role, if any, that PHRs would have in a national health information exchange system. ONCHIT has $350 million from the economic stimulus law to help develop a more robust system. To date, the Nationwide Health Information Network has seven federal agencies,15 private entities and three states.

There are two choices for future system architecture, said Dr. William Yasnoff, chairman of the Health Record Banking Alliance and former NHIN adviser to HHS. In a dispersed network, patient data remains with doctors and hospitals and is transmitted to a regional health exchange, then to the point of care. An alternative patient-centric system would collect all care documents in a patient’s health data bank, and the patient would offer access to providers as needed, Yasnoff said.

Yasnoff said he believes patient-centric data banks are more efficient, reliable and secure. “Having a network of networks is a terrible idea — it is too expensive, unreliable and there is not enough security or privacy,” he said.

However, overhauling existing health exchange approaches would be a major project. Some experts, including Dr. John Loonsk, a former senior policy official at ONCHIT and now vice president at CGI Federal, envision a hybrid of patient data banks and exchanges,

“We will have both types,” Loonsk said. “The technical people realize there will be more than just organic growth" of existing exchanges.

The 2014 Federal 100

Get to know the 100 women and men honored this year for going above and beyond in federal IT.

Reader comments

Thu, Jun 18, 2009

Re: caregivers .. start using Healthvault to store family records its free. Then sign up for AllOne Mobile from AllOne Health ($25/yr) to get mobile access.

Tue, Jun 16, 2009 Bill Harshaw Reston VA

And how about caregivers--they need access to their parents' (older relatives) data. Going through the HIPAA rigamarole is another obstacle to a patient friendly system.

Tue, Jun 16, 2009 Crystal Olig Columbus, OH

I'm curious about patient use of tools like Google Health. Are there any case studies using it? In general, with whatever system or hybrid solution, will patients have the knowledge and access to properly update and maintain their own records?

Please post your comments here. Comments are moderated, so they may not appear immediately after submitting. We will not post comments that we consider abusive or off-topic.

Please type the letters/numbers you see above