Patient Engagement

OpenNotes, Patient Narratives, and Their Transformative Effects on Patient-Centered Care

Article · October 4, 2018

Patient activation and engagement, and the patient-centeredness of medicine are magic words in health care these days. Current medical standards and general recommendations for measuring performance and outcomes in health care and delivery usually contain the patient perspective and experience at critical points, including the Triple Aim framework.

Ongoing clinical and implementation research, although in its infancy, indicates that patient orientation and centeredness may be associated with better compliance and care coordination, or reduced readmission rates and costs; some systematic reviews report on positive effects for improving patients’ knowledge, experience of care, health behaviors, recovery and health status, and a decreased use of resources.

Patient education and self-tracking can help patients contribute significantly to health care improvements, particularly through their assessment of non-clinical aspects of care, their assessment of the care environment, and their observations and experience with the care process.

This early evidence, while valuable, only covers parts of the picture because it represents a rather system-oriented perspective, as compared to a patient-originating perspective. With evolving models and a growing body of research on patient-related aspects and outcomes in health care and practice, the third-person approach — the outsider’s perspective rather than the patient’s — prevails. Only small portions of the current scientific literature include firsthand native patient narrative, and it often highlights the limitations of the patient’s medical knowledge, rather than a sophisticated examination of the patient’s input.

Health care leaders must transform the traditional paternalistic approaches to embrace data from more dialogic or collaborative relationships with patients, where even lay people in need of medical care are recognized as resourceful and capable. To facilitate this shift, clinicians and researchers should examine more deeply some of the general assumptions about patient experience — the concept of patient activation, in particular — which can be done with first-person data from patient surveys and face-to-face interviews. Clinicians also need to become comfortable using patient-friendly language when complex medical terms or concepts may represent a barrier to effective communication.

Questions that could be studied in this regard, are: What defines an active patient; what is the goal of their engagement; what does centeredness imply for them? Could, as some argue, patient engagement and activation mean that patients better adhere to their treatment plans, medical advice, or guidelines? Could it be that the requirements of the health care system are better met when engagement grows? Or would an engaged patient be someone who actively cares for and communicates his or her personal needs, and a patient-centered system would thus be one that proactively cares for meeting these needs? Would positive engagement more broadly characterize patients who actively self-manage their care? And how would one evaluate and measure this?

Simplicity and Complexity

Clinicians make assumptions about patients’ values and their expectations for their own care, specifically, and for the health care system, generally. To gain more insights and get a clearer picture, we simply need to ask them directly.

Concepts of patient engagement have proliferated rapidly across health care settings. Besides such issues having a strong political claim for improving patients’ rights and advocacy — which are ends in themselves — these efforts may also lead to better empowerment, participation, and health outcomes. While patient engagement is an increasingly important component of today’s strategies to reform health care, health professionals still lack a common understanding of its theoretical foundation. At the core of this foundation lies a shift from a clinical consultation to a true partnership in which health professionals and patients work in active collaboration to improve health and health care. Patient engagement must include an invitation for patients to articulate their needs, together with a pledge for addressing and meeting these as essential goals in the care encounter.

While asking a patient for input is fairly simple, patient engagement still is a complex construct. Part of this complexity, as with patient-centeredness, is due to the lack of a gold standard for collecting and measuring it. We have, on the one hand, well-established tools to capture eagerness or readiness to change, i.e., getting involved in your own health, or to measure patient activation in general, such as the Patient Activation Measure (PAM), a survey designed to identify where an individual falls within four different levels of activation. Patient activation, in this regard, is characterized by the skills and confidence that equip patients to become actively engaged in their health care — with evidence, again, showing that patients who are more activated have better health outcomes and care experiences.

But to develop an effective gold standard, we need ways to collect and measure information that is important to the patient, whose answers to our questions and their own questions for clinicians don’t always fit 100% into our questionnaires and predetermined categories. Without this native input, we might miss some important content during the clinical or the research encounter. Kleinman’s explanatory models approach offers useful insights.

Still, we must also recognize that there are potential gaps between the patient’s eagerness to participate more actively in his or her own care and the actual ability to do so. Given the subjective nature of the matter and the individual situation of the patient, it is essential for health care professionals to better get to know the patient — as a human being with reason, will, feelings, and specific needs — in order to engage the person as an active partner in his or her care and treatment.

Studies on transparency in patient-clinician communication, such as OpenNotes, where patients have online access to their primary care physician’s visit notes from home, revealed an overall high patient activation and positive attitude toward self-care and patient engagement even among those with a heavy disease burden. Higher activation scores correlate positively with preventive or disease-specific self-management behaviors. In general, high-use patients often appear to be motivated, involved, active, and engaged in their care.

However, findings from in-depth interviews with these patients, proving their willingness to participate, are not always consistent with PAM scores. Current medical condition (e.g., facing chronic disease) and education (e.g., professional academic background) are factors that have been identified to exert influence on the scores. Agreement with activation measures (as measured by PAM) does not always correspond to individual engagement reports and self-care approval. Hence, some patients might not be well-represented by PAM but could still be engaged, because low PAM scores might not always reflect lower engagement, or vice versa.

Motivation vs. Activation

Formal patient activation may thus be different from a patient’s true motivation to be active and involved, and this, again, may be different from the patient’s ability for self-care. For a patient with chronic illness and debilitating limitations, physical or situational factors above and beyond engagement and activation could be of prime importance. This, of course, could merely reflect the fact that patient engagement and activation are only two among other factors that determine the effectiveness of care.

Patients provide insights into their individual motivational states when we ask them explicitly. For example, patients using OpenNotes described transparency as a tool for helping them to understand the importance of playing an active role in their care. This role would sometimes be referred to as patient-centered, thereby depicting the patient’s stance at the center of the care process.

However, some respondents differentiated between patient-centeredness as a whole person (the idea that the system is built around each individual as a person) and the actual experience of being at the center of concern. The latter seems to refer more to the actual problem a patient presents with, and how it is practically addressed. In other words: Some patients may differentiate between medical issues — which the system, in their view, is able to operationalize — and things assumed outside this framework but still of significance for them, including their health. Both perspectives, accordingly, would describe a rather motivated person, yet their role and assumption to be active as a patient within the system could be different.

Asking patients firsthand about their experiences and what they think is a valuable first step, but it still requires professionals to find ways to enable that conversation to take place effectively and to understand what exactly patients mean, and what they value. To steer and enable lifestyle change and patient involvement in self-care activities, it may be necessary to embrace professional guidance grounded in modern strategies to nudge and modify behavior, including professional health promotion strategies. OpenNotes and other attempts to use transparency in the patient-clinician encounter as a means to patient activation and engagement may serve this transformation toward more balanced and patient-centered models of care delivery.

We can help facilitate this transformation through tools and techniques, research and data, and with inquiry and empathy; but ultimately, patient engagement must come from each individual patient.


Acknowledgements: This work was supported by the Commonwealth Fund, New York, as it builds up on studies performed during my 2013–14 Harkness Fellowship at Harvard Medical School, Boston. Thanks to Melissa Anselmo, David Squires, and Aziz Sheikh for their helpful comments on the first draft of this report. Many special thanks to Tom Delbanco and Jan Walker, co-founders of OpenNotes, who opened their books and doors — in addition to their friendly and collegial support.

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