“The key to good decision making is not knowledge. It is understanding.”
Malcolm Gladwell highlights the difference between being informed, or having information, and being well-informed, that is, understanding information. When we understand information, we can put it to use, act on it, and effectively base decisions on it. Within the context of healthcare, many goals – improved quality of care, patient engagement, and better health outcomes – depend on patients being well-informed about their health and healthcare.
Because patients must have access to their health information in order to understand it, transparency is a critical step for patients to make well-informed decisions. Individuals need access to quality information that is relevant, meaningful, and useful.
The standard clinical information displayed to patients on secure portals, (diagnoses, medications, allergies, and test results) does not always paint a complete picture of a doctor’s visit. The patient may not be able to interpret test results, remember the side effects of certain medications, or why they should adhere to a particular diet.
During an office visit, gaps in patient-doctor communications may occur; the patient may feel overwhelmed, may be uncomfortable asking too many questions and may have difficulty understanding medical terms. Moreover, research shows that patients often forget a lot of what happens in a visit., This can lead to a patient being poorly informed about their medical conditions and options, which may compromise the decisions they make regarding their care.
Inviting Patients to Review their Clinicians’ Notes: A radical but promising change in practice
One relatively simple action that supports understanding is giving patients access to their doctor’s notes. Notes written by clinicians are the thread that ties together many pieces of information in the medical record, but have only rarely been accessible to patients in the past.
OpenNotes, a rapidly growing transparency movement in the United States, has pioneered the initiative of opening clinical notes to patients, with the hope that open access to this information could enhance communication, engage patients more actively in their care, and increase the safety and value of health care.
Initiated in 2010 in the US, the OpenNotes demonstration and evaluation project involved 19,000 patients and more than 100 primary care doctors in three diverse institutions located in urban, rural, and inner city locations. The results were overwhelmingly positive.
Well-Informed Patients Making Better Decisions
Findings from the OpenNotes pilot study suggest that open access to clinicians’ notes keep patients well-informed: three out of four patients reported clinically important benefits, including recalling visit details more completely, understanding their medical conditions better, and feeling more in control of their care.
Few were confused, frightened, or offended by what they read, and many shared their notes with family members.
Patients also reported taking better care of themselves due to access to their doctor’s notes. Of particular note, about 60-78% of patients taking medications reported improved adherence to medications, an important finding given that poor adherence to medical regimens has long been an enormous stumbling block in medical practice.
In a separate study, diabetics with access to physician notes through online patient portals exhibited better glycemic control and increasingly managed their diabetes via non visit-based strategies., A study of patients with chronic heart failure yielded similar findings.
Beyond the Individual: Implications for Health Care
Based on our preliminary experiences offering clinical notes to patients, we are hopeful and optimistic that this relatively simple intervention will foster transformative change in healthcare. Improved decision making among patients with open notes may result in more efficient use of health services by reducing inappropriate or redundant follow up diagnostics, improving adherence to the care plan, and diminishing the likelihood of re-hospitalization. Conversely, they may diminish financial and emotional burdens that result from poorly informed choices and spotty communication.
Patient Safety & Quality of Care: Closing the Communication Gap
By improving communication, open notes carry important implications for patient safety and quality of care. A study at Boston’s Beth Israel Deaconess Medical Center and Boston Children’s Hospital is assessing whether patient safety can be improved by adding new eyes: Can patients (and often family members) identify and help correct errors in their medical records? The project involves an online patient reporting tool focusing largely on safety concerns that require clinician attention.
Researchers are learning that patients, parents and other informal caregivers use the tool and report potential inaccuracies, such as medication errors, incorrect medical history, inaccurate description of symptoms (including wrong side documentation), insufficient or erroneous family histories, and inaccurate description of the physical exam. When one patient reviews one record, as compared to one doctor reviewing hundreds of charts, the likelihood of thorough review increases, and both doctors and patients cite the advantages of having more eyes on the record.
THIS ARTICLE WRITTEN BY EXPERT: Hannah Chimowitz, Tom Delbanco, and Jan Walker, OpenNotes Team