Changing Policies Changes Practices: Patient Access and Input to Their Health Record

Jodi G. Daniel, J.D., M.P.H. | July 25, 2012

One of the promises of health IT is to provide patients easier access to their health information.  This is a focus of ONC’s consumer e-health efforts and CMS’ meaningful use regulations. But this isn’t a new policy for HHS. In fact, we have ensured that patients have had a right to access their health information since 2002.

In 2000, patient access was one of the very first issues I worked on at HHS, as part of the drafting of the HIPAA Privacy Rules. There was a patchwork of state laws that addressed patients getting copies of their records, but there was no consistent right for patients to have access to their health records. It was humbling to be involved in drafting the federal requirement for patients to have the right to see and obtain a copy of the records held by their health care providers and health insurers. Being new to the federal government, I didn’t fully appreciate the impact of the regulations. It seemed logical that a patient could see what was in her medical record. However, this wasn’t always the case.

Shortly after the HIPAA Privacy Rules were published (but before they became effective), I explained the new rules at a conference of physicians. While some of the physicians supported the new policy, there were many in the audience who were surprised and concerned about the release of what they viewed as their private notes. It became clear to me that the patient access policy shifted expectations and altered the relationships of some providers and their patients. As one of the authors of this policy, I realized that this access policy challenged conventional thinking about medical records.

Over time, those expectations have changed. Today, people aren’t talking about whether patients should be able to have access to their medical records, but how they should have access, using what tools, and over what period of time. Meaningful use policies, outlined in the Stage 1 regulation, include provisions to allow patient access to their health information electronically and reduce the time for them to gain access to their health information from weeks to days (the amount of time that a health care provider needs to provide records after the patient has asked for them). And, there is a strong support for these policies. More than 375 organizations have signed the pledge to empower consumers to be partners in their care enabled by secure, timely, electronic patient access to their health information.

Now, the conversation has gone beyond patient access. We are having policy discussions in our advisory committee and across ONC about the health information that patients provide to their doctors and whether and how that information should become part of the medical record.

For example, if I weigh myself every day:

  • Can I send this information electronically to my provider?
  • Does she need to incorporate that into my medical record?  If so – how would the information be incorporated in the record?
  • Does the weight that I report have equal value to the weight recorded by a nurse?

Similar questions are raised about symptoms—headaches/back pain/potential side effects from medications. Historically, providers have interviewed us, and the medical record reflects an abbreviated, filtered version of this interview. The difference is that patients may soon be able to make sure that information is put directly into their medical record in their own words.

This raises similar reactions from some health care providers because it again changes the way we think about a patient’s medical record. We have heard from some providers who think this information is similar to what they are already collecting from their patients and there are ways to manage the flow.  From others, we hear that the information may be unreliable or voluminous and may affect their ability to manage the health information contained in the medical record—or they just might not understand it. We’re once again considering related policy that challenges conventional thinking about the role of patients and their information and the role of the medical record. There are opinions on both sides.

The policy regarding patients and their medical records has been shifting over the years. To help folks understand the evolving policy developments and to understand some of the open discussions, ONC has posted a policy issue brief that focuses on patient access to their health information.

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