Integrative Medizin und Gesundheit

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Prof. Dr. med. Joachim E. Fischer

Joachim E. Fischer ist seit 2006 Direktor des Mannheimer Instituts für Public Health an der Medizinischen Fakultät Mannheim der Universität Heidelberg. Ausbildung zum Kinderarzt (Kinderklinik Tübingen, anthroposophische Krankenhäuser Filderstadt und Herdecke). Langjährig Oberarzt auf der Intensivstation der Universitätskinderklinik Zürich. Nach Ausbildung an der Harvard School of Public Health in Boston zum klinischen Epidemiologen Leitung einer psychobiologischen Forschungsgruppe an der Eidgenössisch Technischen Hochschule Zürich.

8 Toward Fully Transparent Communication: Shared Medical Records

Tom Delbanco and Jan Walker

Zusammenfassung

Wie bereits in anderen Bereichen des gesellschaftlichen Lebens, spielt eine gänzlich transparente Kommunikation auch in der Gesundheitsbranche zunehmend eine zentrale Rolle. Dabei wird davon ausgegangen, dass eine Basis des offenen Austauschs zu einem besseren Gesundheitsversorgungssystem sowohl für Patienten als auch für deren Familien und Ärzte führt, sich langfristig positiv auf die Patientensicherheit auswirkt und zu einer Wertschöpfung im Bereich der Gesundheitsversorgung für alle Beteiligten beiträgt. Transparente Krankenakten stellen ein wertvolles Werkzeug dar – sofern sie akkurat gepflegt und mit entsprechendem Respekt behandelt werden – mit dem Ziel, die Gesundheit und deren Wiederherstellung sowohl in der wissenschaftlich ausgerichteten als auch der Integrativen Medizin zu fördern.

Sie sind für den offenen Informationsaustausch zwischen Patienten und Gesundheitsdienstleistern von wesentlicher Bedeutung. Krankenakten werden zunehmend in Computersystemen verwaltet; hierdurch eröffnen sich neue Möglichkeiten des sinnvollen Informationsaustauschs, und zwar auch außerhalb der Einrichtung, in der die Krankenakten verwaltet werden. Unabhängig von der Praxisgröße stellen Ärzte bereits heute ihren Patienten routinemäßig Laborergebnisse, Medikamentenpläne, bekannte Allergien und andere ausgewählte Inhalte der Krankenakte online über sichere Patientenportale zur Verfügung. Aber schon bald werden Patienten ihre Krankenakte auch auf ihre eigenen Geräte herunterladen können.

Bereits seit etwa zehn Jahren werden Erfahrungswerte in Zusammenhang mit der internationalen OpenNotes-Bewegung (www.opennotes.org) erfasst. Diese Bewegung zielt darauf ab, die Aufzeichnungen des Arztes unmittelbar nach dem Patientenkontakt in die jeweilige Krankenakte aufzunehmen und diese anschließend dem Patienten zugänglich zu machen. Im Folgenden werden nun die geschichtliche Entwicklung und die Erfahrungen aus der Vergangenheit reflektiert und ein Blick auf die zukünftige Entwicklung geworfen.

Summary

As in so many other aspects of society today, fully transparent communication is taking center stage in health care. The hope is that a foundation of open interchange will improve care and the delivery system not only for patients, but also for their families and clinicians; that it will positively impact patient safety; and that it will contribute to healthcare value for all stake holders. Open records have power when they convey accurate information, respect, and a genuine desire to promote health and healing, both in scientific and Integrative Medicine.

Open records are central to transparency between patients and their providers. Increasingly, medical records are found on computerized systems, opening possibilities for appropriate sharing of their content beyond the walls of the facility in which they are housed. Today, practitioners, whether in large or small practices, routinely make laboratory results, medication lists, known allergies, and other selected record content available to patients online via secure patient portals. Soon, patients will easily download their medical records to their own devices.

We write after a decade of experience in the international OpenNotes movement (www.opennotes.org) that seeks to ensure that the notes clinicians write following encounters are included in the records available to patients. In what follows, we look back on a bit of history, outline some of what we are learning, and point toward future expectations.

8.1 Background

The OpenNotes movement has its roots in the United States in the 1960s when Lawrence Weed convinced medical practitioners to organize medical notes in a new, more rigorous way (Weed 1968). He created the “SOAP” note that became the basis of the “problem-oriented” medical record. As the patient and clinician addressed a problem, Weed suggested dividing the note into four components: Subjective (what the patient experiences), Objective (what the clinician observes or finds on examination), Assessment (how the clinician and patient put things together), and Plan (what the next steps should be).

In 1973, Shenkin and Warner proposed in the New England Journal of Medicine that patients be invited to review their medical records, including what their clinicians wrote about them. Their paper stimulated our early thinking about the invisible walls that often separate patients – and their families – from those who care for them (Fischbach et al. 1980; Delbanco 1992). Particularly through our efforts with OpenNotes over the past decade, we have learned that when communication among patients, families, and clinicians is more transparent, patients and families can participate more actively in care. In fact, everyonebenefits. Doctors, nurses, and other clinicians also feel more involved and more trusting, and they find they can provide care more easily and effectively. Transparent communication is the backbone of such relationships.

For a long time, clinicians resisted a major opportunity to form meaningful partnerships. They developed and maintained medical records, but did not share them with their patients. Then, in 1996, passage in the United States of the Health Insurance Portability and Accountability Act (HIPAA) began to change the rules. It gave patients the legal right to access their medical records upon written request, as is true now in many parts of the world. Nevertheless, even as records became digitized, the process for patients gaining access was often daunting, costly, and discouragingly slow. And while secure online portals began to offer patients access to some elements of their records, clinical notes were almost always hidden.

The OpenNotes program began by testing the hypothesis that inviting patients to read their clinicians’ notes is a good idea. In a 2010–2011 study, we found that patients were almost unanimous in their support, and that clinicians felt little impact (Delbanco et al. 2010; Walker et al. 2011; Delbanco et al. 2012). Since that initial study, hundreds of institutions have implemented Open-Notes, and we and others have conducted research to further understand their effects.

8.2 Patient and Clinician Experiences with OpenNotes

What have we learned? In a 2017 survey of 22,000 patients who had read their clinicians’ notes through secure online portals for as long as seven years, more than two thirds reported that reading their notes was very important for taking care of their health, for remembering their care plans, and for educating them about their health and illness (Walker et al. 2019). In a finding that is particularly striking, 64% of the patients responding reported understanding their medications better, and 14% indicated that reading their notes made them more likely to take their medications as prescribed (DesRoches et al. 2019). In addition, more than a third reported sharing their notes with others, primarily family members. Older and chronically ill patients in particular expressed desire to share access with their care partners, and several patient portals now offer ready “proxy” access to family members granted such permission by the patient.

A large body of literature shows that patients forget – or remember incorrectly – a significant amount of the information communicated during visits, and recall may be particularly affected by stress and anxiety. Patients report that reading their clinical notes aids recall of information and also strengthens collaboration and teamwork with their doctors. We have learned that even the simple offer to share notes may increase confidence and trust and help patients to be more “present” during appointments. Moreover, benefits appear to be greater for the most vulnerable patients. In the United States, these include patients who are older, less educated, nonwhite, Hispanic, or do not speak English at home.

Clinicians anticipating transparent medical records worry about frightening or confusing patients. But they invariably underestimate how resourceful patients can be. When queried about the negative effects of access, only 3% of patients surveyed reported feeling very confused, and just 5% felt more worried by what they read. Importantly, some patients choose not to read their notes or records; open notes offer patients full freedom of choice.

Not all patients are happy with the notes they read. Some find them disrespectful or inaccurate, thereby straining their trust. Nevertheless, access to clinical notes may also improve patient safety and diagnostic accuracy. Since medical records are written by humans, they inevitably contain errors, and research suggests that sharing clinical notes may make care safer by helping to close important feedback loops. Patients and their caregivers can, and do, identify important inaccuracies, omissions, and oversights in their records. In the same 2017 survey, more than 20% of patients reported an error, and more than 40% of these patients considered it “serious” (Bell et al. 2020). Considerable research today is focusing on the patient safety implications of transparency. One patient’s eyes looking at one record may be far more effective than less focused strategies examining thousands of records in an effort to assure safety.

Overall, a large number of studies of patient experiences with, and attitudes toward open notes have shown remarkable consistency. More than 95% of patients in the United States and abroad consider web-based access a good idea, whether or not they choose to read their notes. And in the United States, almost two in three describe the practice as extremely important for choosing future clinicians.

How do doctors and other clinicians report on offering access to notes? Before starting, they are generally hesitant, and some are quite opposed. Doctors have traditionally felt that records “belong” to them, rather than the patient. In addition, they worry that patients will disturb their work flow with questions, requests for corrections, and with unnecessary worries. But after at least a year of experience, the majority of 1,628 clinicians we surveyed in 2018 in the same 3 health systems reported feeling positive about the practice (DesRoches et al. 2020). Most doctors (71%) considered the innovation a good idea, with a similar proportion of advanced practice nurses and physician assistants agreeing that it is useful for engaging patients in their care. Moreover, the majority of doctors (84%) reported that patients never contacted them with questions about their notes, or did so less than once a month. On the other hand, a third of doctors reported spending more time writing their notes. They report becoming more mindful of the language they use, perhaps thereby contributing to enhanced perceptions of care. Primary care doctors, in particular, describe adjusting their language to avoid being perceived as critical of patients, omitting terms such as “non-compliant,” and “patient denies,” and modifying how they document sensitive information, such as social stresses or mental illness.

8.3 Mental Illness and OpenNotes

Early in our experiments, notes prepared by mental health specialists were almost always excluded, even though primary care doctors, whose practices invariably address the needs of those with mental illness, were offering open notes. But hesitation by mental health professionals is diminishing rapidly (Kahn et al. 2014; O’Neill et al. 2019; Blease et al. 2020; Chimowitz et al. 2020). Spurred initially by experiments in the Veterans Administration, psychiatrists and psycho-pharmacologists are now routinely opening their notes to many of their patients, including those with psychotic and major affective disorders. In addition, psychotherapists are turning to them as part of their therapy. One eminent therapist in the USA has long “prescribed” his notes as “homework” for his patients (personal communication: Angelo McClain, PhD). Today, as efforts increase to destigmatize those with mental illness and include them in the mainstream of care, in more than a quarter of the systems in the United States currently offering open notes, mental illness specialists have joined in the practice.

Rapidly Spreading Practice

Opening notes does not require new software; the notes are already in the electronic health record. Opening notes requires only that providers decide to share their thinking with their patients by adding clinical notes to the information available to patients when they log into the patient portal. This practice is spreading rapidly internationally. Throughout all of Sweden, Estonia and Finland, and much of Norway, patients are invited to review these notes electronically, and initiatives in the UK, Canada, Australia, and Germany are under way (DesRoches et al. 2019). As we write in the middle of 2020, more than 50 million patients registered on portals have now gained access to their notes in the United States, and making them available to patients throughout the country will become federal law in November, 2020.

OurNotes

A logical next step may be to have medical records co-generated and held jointly by clinicians and patients (Mafi et al. 2017). We are developing and testing such practice in several parts of the United States. The genesis for the concept of OurNotes relates both to Weed’s original postulates that led to the SOAP note and to growing worldwide interest in “shared decision-making.” As Angela Coulter described elegantly in her monograph, The Autonomous Patient, patients have a unique body of knowledge about their particular circumstances and experiences with health and illness (Coulter 2002). Similarly, clinicians have unique expertise. Therefore, the goal should be for this dyad to merge these disparate bodies of knowledge in such a way that both the patient and clinician benefit. In the context of Weed’s suggestions, the patient’s body of knowledge shapes the Subjective component of care. In turn, clinicians are highly trained to develop the Objective portion of the note by listening to the lungs, evaluating the heart sounds, or manipulating the swollen knee. Together, the Subjective and the Objective form the basis for a unified Assessment and Plan, where shared decision-making takes its ultimate shape.

In OurNotes, a few days prior to a scheduled visit either in person or through telemedicine, patients receive a message asking them first to review their prior open notes and then to complete and return an electronic form on which they

a) provide a brief interval history, and

b) list their goals for the visit.

Once submitted, the forms are saved as permanent parts of the electronic medical records. Clinicians review them prior to or during visits, and then, depending on a variety of technologies, either refer to them or incorporate them in the note itself. OurNotes has passed pragmatic tests at all our test sites: While organized feedback from both patients and clinicians is still being collected, at the end of year-long pilot programs the doctors in each of four settings across the United States have agreed to continue and further refine the intervention. Importantly, many striking anecdotes point both to more active patient involvement and increased efficiency for the doctors.

Spurred by the COVID-19 pandemic and the rapid implementation of telemedicine visits, several practices are tailoring OurNotes specifically for telemedicine (Kriegel et al. 2020). In addition to the interim histories and goals for a visit, patients are now asked to add information about their use of medications and, for those with equipment at home, to measure and forward also their vital signs and other measurements.