8. Open access to information that will enable individuals to make the best decisions and become well-informed individuals.

By Hannah Chimowitz, Tom Delbanco, and Jan Walker, OpenNotes Team

This is part of a series of essays on the Health Rosetta’s Principles.

“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

“It really is much easier to show my family who are also my caregivers the information in the notes than to try and explain myself. I find the notes more accurate than my recollections.”

“Weeks after my visit, I thought, ‘Wasn't I supposed to look into something?’ I went online immediately. Good thing! It was a precancerous skin lesion my doctor wanted removed.”

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.


In conclusion: Present and Future Use

Emerging evidence shows that when patients understand their health information and are willing to manage their own health and healthcare, they are more likely to make better decisions about their health. Moreover, these patients are more likely to have better health outcomes and lower costs of care. Many institutions recognize patient engagement as a worthwhile investment, and employ strategies to help patients become more actively involved in their care through education, patient activation, and shared decision making. OpenNotes is one such strategy that can facilitate patient understanding and engagement by giving patients access to contextualized, personalized, and most importantly, understandable health information they can act on.

Less than three years after publication of the OpenNotes demonstration and evaluation study, dissemination of this new practice has been rapid, with more than 5.5 million patients now offered ready electronic access to their notes at over 40 institutions in the US. By providing a transparent platform that can enhance productive communication and engagement among patients, clinicians, and family members, quality of care and patient safety may increase, along with healthcare value. But much to learn remains, and unforeseen consequences are likely. It will be fascinating to watch what happens in the US and around the world as patients and clinicians share in this new practice and come to understand its effects.

“I probably only have 15 or 20 minutes when I make a regular…short visit and so what [the doctor] says sometimes can be a lot, and I maybe didn’t digest it properly in the office. So now when I go home and I open that OpenNote, I can review it and take each part as slowly as I want and go back over it to make sure I understand it correctly and that’s a wonderful opportunity.”

“Now I come in with a slew of questions or something prepared that I really want to discuss with the doctor. I feel more so on the doctor’s level using OpenNotes whereas prior to that…. I never felt as though I really could question anything or even have an open conversation about anything that the doctor would tell me.”

-Patients with OpenNotes

“I tell my patients often, you know, we get a snapshot of their health. We see them for 15 minutes every three or four or six months. But they live the full length film. And so what they do day in and day out needs to be based on the education that we give them in terms of their lifestyle habits. And I think OpenNotes takes the next step in helping to open the door to that engagement.”

“I think patients who read their notes are better informed and if you’re better informed you are more empowered to participate in your care and I think this is good not just for patients, but clinicians also appreciate having informed participatory patients who bring good questions to the visit, who follow the plan of care, who raise questions when they have questions and this more equal relationship between the clinician and the patient leads to better outcomes for their health.”

-Primary Care Physicians

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