En español | Imagine Zack, a 73-year-old husband who regularly accompanies his wife, Sue, to her neurology and primary care appointments for her dementia care. In the snug confines of the medical exam rooms, he notes that the doctors, nurses and medical assistants who rush in and out rarely make eye contact with them. Instead, they stare fixedly at their computer screens, even before they sit down. What could be so interesting on those screens, Zack wonders? What's written in the notes about Sue's condition that these health care professionals can see but aren't sharing with us? Recent legal changes mean he is now in a position to find out.
For the past decade, most U.S. health systems have encouraged patients and, with patient permission, their family caregivers to use online portals in the health systems’ electronic health records for private messages to and from doctors and to access a patient's problem list, medication list, appointment schedule and lab results. This has been helpful for keeping family caregivers more informed about the details of treatment plans. But what's written in the chart notes — doctors’ unvarnished impressions of the patient's condition — has rarely been available online. (Patients can always ask for printed copies of their charts but usually will have to pay exorbitant "copying fees.")
A new federal rule now requires most health care providers to make their electronic medical record chart notes, renamed "shared visit notes," available to patients for no charge. This part of the 21st Century Cures Act means clinical notes that the doctor writes are suddenly visible — observations on the patient's presentation, diagnoses, prognoses and treatments being considered. This will give many patients and family caregivers a first-time glimpse into the clinical reasoning of sometimes cagey health care professionals.
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Patient and caregiver advocates have been calling for this new transparency for years. According to OpenNotes, an international movement for more open physician-patient communication, research suggests that shared visit notes have increased the quality and safety of health care in the 260 health systems around the world where they are used. They also create the possibility of greater partnership among doctors, caregivers and patients working from the same set of information.
How can caregivers best use this new transparency to help their care receivers? Here are some ideas:
Consider what you want to know
Gaining greater insight into the doctor's thinking allows caregivers to become more involved in medical decision-making, especially when their loved ones have cognitive deficits. But it can also expose them to information that could be upsetting. Would reading a gloomy medical assessment provide a vital reality check or rob them of hope? Would it offer greater clarity and guidance or more emotional anguish? For some caregivers, having more information will provide them greater assurance and reduce their anxiety. For others, the opposite is true.
Make a plan for more discussion
For a variety of reasons, including insurance and legal requirements, health care professionals are obliged to be open and frank in the shared visit notes. If caregivers opt to read them, then they should also have the means for follow-up discussion with the professionals, not to confront them ("Why did you write that?"), but to ask for clarification or further explanation. If doctors fail to say, “Please let me know if you have any questions about anything in the shared visit notes,” then caregivers should ask specifically about their preferred means for having a more extensive conversation about what's been written to clear up any misunderstandings.
An invitation to a slower dialogue
In ideal outpatient health care visits, the doctor, patient and caregiver have productive conversations that build collaboration. But physicians often look like they're in such a rush that patients and caregivers may feel subtly discouraged from saying anything that might hold them up. The shared visit notes can become a forum for a slower, less constrained dialogue in which caregivers respond to what doctors have written by adding their own notes with their own observations, questions and clarifications. The physicians can respond back in writing or address remaining concerns in person at the beginning of the next medical appointment.
A husband like Zack might be delighted to be able to read the shared visit notes of his wife's neurologist and primary care provider. What he may read about their clinical impressions may not be so different from what they could have told him during visits, but he would feel like he was being included more in addressing her dementia symptoms with whatever means possible. He could add information to the doctors’ notes or even offer a compliment or two on their good care. It might give him some solace that he was helping his wife, in partnership with her doctors, as fully as he could.
Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter and Facebook.