What would happen if you knew what a doctor really thought about your health or that of an aging family member? Would it scare you? Prompt you to ask more questions? Would it help you take better care of yourself or your loved one?
These are some of the questions the authors of the OpenNotes research study sought to answer. The one-year pilot project began in 2010 and was designed to determine how sharing doctors’ notes with their patients would affect the quality of the care they received. Participants were able to access the notes taken by their primary care physician during appointments through a secure online portal. This simple change had a remarkable impact on patients.
Gauging Participants’ Feelings About Transparency
Before being granted access to their doctor’s notes, people were instructed to answer a few questions regarding their attitudes towards the initiative. A whopping 90 percent of patient survey respondents said that they wanted to be able to read their doctor’s notes after a visit, while 75 percent said that having access to this information would incentivize them to take more responsibility for their own health.
Patients who were also caregivers immediately saw an additional benefit of the initiative. One woman stated that being able to see the notes her elderly mother’s doctors had made would help her understand the health goals they had set together and enable her to provide better care.
Patient privacy restrictions (HIPAA) can make it difficult for some caregivers to access their family members’ records, but the survey results indicated that 22 percent of participants would be more than willing to share their physician’s notes with family and other doctors.
Interestingly, physicians who participated in the study were conflicted on whether allowing patients to see their notes would be a good thing or not. Many feared that their notes would be misinterpreted or that giving patients access to reports would cause them to bombard already busy doctors with time-wasting questions and concerns. However, the results of the study did not confirm the physicians’ fears.
The Benefits of Open Notes
The results were resoundingly positive. Only one to eight percent of participants reported that the notes caused them confusion, anxiety or offense. In fact, more than three-quarters (77 percent to 87 percent) reported that having access to their physician’s notes helped them feel more in control of their healthcare. When it comes to tangible health outcomes, 60 percent to 78 percent of participants taking medications reported increased adherence to their regimens. At the end of the year-long pilot, a whopping 99 percent of participants wanted Open Notes to continue, and no physicians elected to stop.
Senior study author Tom Delbanco, MD, is optimistic about what the sharing of doctors’ notes will mean for the future of health care. “I expect that over time everyone will benefit enormously from such transparency.”
How to Access Physician’s Notes
Although electronic medical records have been touted as a promising advancement in the delivery of health care, they’ve been relatively slow to catch on. Some doctors may utilize an online portal where patients can send messages and access certain basic information and test results, but not all these platforms feature the notes that doctors take during appointments. (You can use this tool on the Open Notes website to see which institutions near you currently offer online access to doctors’ notes.)
The best way to gain insight into what a doctor is thinking is to simply ask for a copy of their notes via phone or email or in person at an appointment. Patients are legally entitled to their notes, so there should be no pushback from health care providers. Keeping these documents on file can help patients remember what advice and instructions were given during an appointment, reference previous orders and treatment options, and easily share their information with caregivers and other physicians.
This is a gamechanger for caregiving families who have a difficult time remembering details from countless appointments. Once patients (and any other authorized individuals) have these notes, they can share this information with whomever they please. This means that family caregivers can reference what was noted in appointments, regardless of whether they were present, and other professionals, such as visiting nurses can be privy to a general practitioner’s fundamental plan of care.
Research shows that engaged patients receive better care and forge stronger, more open relationships with their providers. Integration of a patient’s care team is also invaluable. Whether you’re taking charge of your own health or trying to help manage that of someone you love, requesting these records can help you take a more proactive and coordinated approach to these goals.