Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead

Abstract

Background: Little information exists about what primary care physicians (PCPs) and patients experience if patients are invited to read their doctors' office notes.

Objective: To evaluate the effect on doctors and patients of facilitating patient access to visit notes over secure Internet portals.

Design: Quasi-experimental trial of PCPs and patient volunteers in a year-long program that provided patients with electronic links to their doctors' notes.

Setting: Primary care practices at Beth Israel Deaconess Medical Center (BIDMC) in Massachusetts, Geisinger Health System (GHS) in Pennsylvania, and Harborview Medical Center (HMC) in Washington.

Participants: 105 PCPs and 13,564 of their patients who had at least 1 completed note available during the intervention period.

Measurements: Portal use and electronic messaging by patients and surveys focusing on participants' perceptions of behaviors, benefits, and negative consequences.

Results: 11,155 [corrected] of 13,564 patients with visit notes available opened at least 1 note (84% at BIDMC, 82% [corrected] at GHS, and 47% at HMC). Of 5219 [corrected] patients who opened at least 1 note and completed a postintervention survey, 77% to 59% [corrected] across the 3 sites reported that open notes helped them feel more in control of their care; 60% to 78% of those taking medications reported increased medication adherence; 26% to 36% had privacy concerns; 1% to 8% reported that the notes caused confusion, worry, or offense; and 20% to 42% reported sharing notes with others. The volume of electronic messages from patients did not change. After the intervention, few doctors reported longer visits (0% to 5%) or more time addressing patients' questions outside of visits (0% to 8%), with practice size having little effect; 3% to 36% of doctors reported changing documentation content; and 0% to 21% reported taking more time writing notes. Looking ahead, 59% to 62% of patients believed that they should be able to add comments to a doctor's note. One out of 3 patients believed that they should be able to approve the notes' contents, but 85% to 96% of doctors did not agree. At the end of the experimental period, 99% of patients wanted open notes to continue and no doctor elected to stop.

Limitations: Only 3 geographic areas were represented, and most participants were experienced in using portals. Doctors volunteering to participate and patients using portals and completing surveys may tend to offer favorable feedback, and the response rate of the patient surveys (41%) may further limit generalizability.

Conclusion: Patients accessed visit notes frequently, a large majority reported clinically relevant benefits and minimal concerns, and virtually all patients wanted the practice to continue. With doctors experiencing no more than a modest effect on their work lives, open notes seem worthy of widespread adoption.

Primary funding source: The Robert Wood Johnson Foundation, the Drane Family Fund, the Richard and Florence Koplow Charitable Foundation, and the National Cancer Institute.

Figure 1. PCPs and patients who “agreed” or “somewhat agreed” with statements about the potential benefits of open notes to patients

The percentage that responded “don’t know” is not displayed. PCPs who responded “don’t know” ranged from 8% to 26%. Patients who responded “don’t know” ranged from 0% to 12%. BIDMC = Beth Israel Deaconess Medical Center; GHS = Geisinger Health System; HMC = Harborview Medical Center; PCP = primary care physician.

Figure 2. PCPs and patients who “agreed” or “somewhat agreed” with statements about the potential risks of open notes to patients

The percentage that responded “don’t know” is not displayed. PCPs who responded “don’t know” ranged from 4% to 19%. Patients who responded “don’t know” ranged from 0% to 3%. PCPs were not asked about patients’ privacy concerns. BIDMC = Beth Israel Deaconess Medical Center; GHS = Geisinger Health System; HMC = Harborview Medical Center; PCP = primary care physician.

Figure 3. PCPs and patients who “agreed” or “somewhat agreed” with statements about the future of open notes

The percentage that responded “no opinion” is not displayed. PCPs who responded “no opinion” ranged from 0% to 13%. Patients who responded “no opinion” ranged from 6% to 19%. BIDMC = Beth Israel Deaconess Medical Center; GHS = Geisinger Health System; HMC = Harborview Medical Center; PCP = primary care physician.