PHR Challenges

Patient health records, traditionally, have been owned and accessed by health care providers. The IOM report Crossing the Quality Chasm recommended the "patients should have unfettered access to their own medical information." HIPAA regulations mandate that patients be allowed access to their records. Patients will want access to their records online, as electronic records become more prevalent. Advantages to patient access of their records include giving patients a more powerful role in their own care, allowing them to correct inaccuracies, encouraging them to have a better understanding of their health issues, and promoting trust and communication. On the other hand, providers express concern that they will need to abridge or omit parts of the record that are sensitive and that patients could become unnecessarily concerned about things they do not understand.

Drs Halamka, Mandl, and Tang describe 7 challenges in Early Experiences with Personal Health Records:

1. Should the entire problem list be shared?

2. Should the entire medication list and allergy list be shared?

3. Should all Laboratory and diagnostic test results be shared with the patient?

4. Should clinical notes be shared with the patient?

5. How should patients be authenticated to access the PHR?

6. Should minors be able to have their own private PHR?

7. Should the PHR include secure clinician/patient messaging?

The first 4 sharing issues were resolved over three different systems in similar ways.

1. Problem lists were shared.

2. Medication, and allergy lists were shared.

3. Results were shared in this fashion: 1) at one system, normal results were released to patients within one day and abnormal results within 3 days so that all results were communicated without fail, but clinicians had a chance to communicate the results first, 2) at the second, all results were released to patients immediately except for HIV results due to state laws, and pathology and MRI/CT cancer staging results held for 1 week to allow personal clinician/patient communication, and 3) all results were shared.

4. Full text clinical notes were not shared in any of the three systems.

5. User authentication, critical to PHR privacy and data integrity, was by user name and password, granted by face to face identification or by written signature verification.

6. In two systems, patients under 18 were not able to have their own personal PHR. In the third, a children’s hospital, the challenge was handled this way: children less than 12 had limited or no access to their record but their guardians had full access, patients 12-18 and their guardians has access to the record but specific parts could be restricted by either, and patients 18 and over had complete access and control of their records.

7. All three systems used secure messaging as part of the PHR. Providers were not flooded with messages; rather electronic messages replaced a similar number of phone calls. But legal liability concerns and the fact that online medical advice is not often reimbursed were issues.

References

Halamka, J., Mandl, K., and Tang, P., Early Experiences with Personal Health Records J Am Med Assoc. 2008 Jan-Feb 15(1): 1-7

Fowles, J., Kind, A., Craft, C., et al. Patients’ Interest in Reading Their Medical Record. Arch Intern Med. 2004 Vol 164, 793-800

http://distractible.org/2009/04/13/whose-chart/

Submitted by Joan Rote