Commentary on PHR Inclusion

The goal of Personal Health Record (PHR) is the empowerment of patients and their families and friends to manage their clinical health records. HIPAA states that PHR will “provide patients and their families with timely access to data, knowledge and tools to make informed decisions and to manage their health.” This provision allows patients the ability to view, revise and make corrections to their medical records, billing records, enrollment and claim forms.

The increasing popularity of PHR is forcing the debate on how much detail should be made available to patients. At this time, there is no specific wording in any regulation about this matter. The patient advocacy group demands that all health records should be made available while health care providers argue that full disclosure without the appropriate patient education may cause unnecessary alarm and potentially might do more harm than good. Even health care institutions with some significant EMR experiences have put in place different approaches. Some have full disclosures. Some do not disclose at all but continues the practice of having the health care providers discuss and review results to patients face-to-face. While some others have a hybrid of the first two and that is they publish the results with direct links to relevant materials that patients can check into. While still some others who have practiced one approach later changed their stance to another. Kaiser for instance first started with full disclosures on laboratory results and later pulled back to report only normal ranges.

Here are some questions related to this debate. Who should determine the specificity of the disclosure? Will we leave it to the hands of the health care providers or should it be the patients? How can we accommodate patients who demand more control over their records? Are health care institutions intentionally not fully disclosing due to the high price tag of responding to patients’ questions? What about patient education?

After my daughter’s doctor visit recently, I was handed the results of her blood tests. The doctor informed us that the results checked normal and if we decide to proceed with additional treatments that we should call her back. She explained in some detail how to read the results and I will not claim that I fully understood all the clinical jargon she used in her explanations. After the visit, my daughter and I checked the Internet. I am fortunate to have a sister who is an internist in San Diego so I called her up and I asked for her expertise as a second opinion. My daughter asked her friends at school too. She shared me the things that she found out from her friends and I shared her what my sister told me. We discussed all the information that we gathered. In the end, she decided not to proceed with the additional treatments and I was happy with her decision.

Based on my experience, in my opinion, it is the right of patients to have full disclosure on their health records. This is a tall order, I understand. With this right comes the responsibility of patients in seeking proper education in understanding their health records and their health conditions. Patients need to seek all sources of information they can find. The Internet has been and continues to be the primary search engine of health care information but because it is not regulated, it is necessary for both patients and health care providers to partner together. Family members, friends and support groups are also invaluable sources of information.