High-value health care relies upon effective information exchange. To that end, enormous investments are made by clinicians in building their understanding of disease prior to channelling this information between each other and to patients, and by health care systems in facilitating this flow of data using platforms such as electronic health records (EHRs). But there is an aspect of information exchange that has attracted less attention and fewer resources: that patients are experts in their experience and know much more than clinicians about their own health and the needs and goals important to them. The inattention to this element has exacerbated clinician/patient information asymmetry. Simply put, clinicians are experts in medicine, but patients are experts in their experiences, preferences, and values, and both clinicians and patients can participate more effectively in care if these imbalances are reduced.
The term information asymmetry is often used in business, describing situations in which one party has information of greater depth and quality than the other during commercial transactions. Such asymmetry may create imbalances of power, breakdowns in contract negotiations, and market failures. Thinking about information asymmetries as limitations of systems that should be corrected could enhance the effectiveness of relationships and improve outcomes in clinical care as well as in business.
Reducing information asymmetry is also a potential differentiator between care that is high value versus merely average. After all, while clinicians mostly understand pathophysiology and the natural history of disease, patients have a monopoly on their experiences, symptoms, functional status, and the outcomes that matter most to them. These aspects are at the core of their health concerns and should guide clinical decisions and treatment goals.
No wonder, then, that clinicians cannot do their job well without knowing what patients know. Failing to appreciate information asymmetries and the true picture through the patient’s eyes could lead to poor decisions, poor outcomes, increased cost, potential risk, and patient harm. The impact of information asymmetries may be missed if quality is measured solely in terms of crude clinical outcomes (e.g., mortality) or process-oriented metrics under the direct influence of clinicians (e.g., appropriate administration of antibiotics prior to surgery). But data consistently show the dominant influence of patient perceptions of health and experiences of care, including the level of communication and trust in their doctor, on outcomes and quality.
So how should health care systems address information asymmetry? The answer can be approached at a strategic level (i.e., involving systems and policy); clinical level (i.e., involving point of care delivery and decision-making); and tactical level (i.e., involving processes and practices).
Strategic Level: Systems and Policy
First, health care providers and policymakers have to believe that information from patients (i.e., the needs, preferences, and outcomes that matter most to them) is central to delivering high-value care, and is essential for creating a culture of accountability in capturing and using that information.
Key strategies include (1) defining information and measurement development priorities, frameworks, and sets of quality and performance measures based on outcomes, over process-oriented metrics, and (2) integrating a data infrastructure.
Provider organizations, private-public partnerships, and medical societies could contend with information asymmetry using patient-reported outcome measures (PROMs), validated surveys quantifying patient perceptions of health-related quality of life, physical function, pain, and emotional and social well-being. Other instruments include patient-reported experience measures (PREMs) capturing various aspects of the care experience, and patient engagement or activation measures (PAMs) that measure the propensity of patients to engage in their health and health care ecosystem. Health systems and clinical practices should be held accountable for the collection and analysis of these patient-focused measures. For the most part patients with substantial limitations, poor resiliency, and low activation, measured by these instruments, seem less likely to achieve the best outcomes following medical therapies and surgical interventions. Measures and measurement development strategies should involve patients themselves wherever possible.
There is also a growing interest in the use of patient-reported outcomes (PROs) as performance measures (PRO-PMs) — risk-adjusted metrics for assessing change in delivery system performance over time in caring for specific populations. Such measures especially hold promise in the shift toward alternative payment models and value-based bundled payment. Care covered under bundled payment programs for surgical episodes of care could require measurement of PRO-PMs before and after procedures; ultimately, transparency on outcomes that matter to patients could and should help drive improvement.
A requirement of an information measurement strategy is a user-friendly integrated digital system for collection, analysis, and visualization of data at the point of care. Significant advances have been made by some organizations in systematically capturing PROMs across large health care systems, such as Partners HealthCare in Boston, and those delivering comprehensive integrated care, such as the integrated practice units (IPUs) at University of Texas Health Austin. But further work is needed to harness their use in real-time and integrate them into EHRs and system workflows. To date, EHRs have prioritized communication among clinicians and effective billing under fee-for-service payment systems, rather than focusing on ways to correct information asymmetries to directly improve care and quality time with patients.
Recommendations to Resolve Information Asymmetry
Actions are needed at all levels of health care to give credence to patient experiences, preferences, and values related to their health:
Strategic Level: Systems and Policy
We must value information that matters to patients and hold ourselves jointly accountable for a culture rich in meaningful, usable information.
Information frameworks (measurement priorities, outcome measurement sets) and data infrastructures should be defined and mandated with patient involvement in the process.
Quality metrics should include a comprehensive set of patient-focused measures; today these include patient-reported outcome measures (PROMs), patient-reported experience measures (PREMs), patient activation measures (PAMs), and PRO performance measures (PRO-PMs) to improve care.
Clinical Level: Care Delivery and Decision-Making
A team approach involving a multidisciplinary team sharing their interactions with patients and using patient-reported outcomes as a common language could restore the balance in information asymmetries.
Initiatives to enhance patient engagement, e.g., communication skills training, peer-to-peer appraisal and coaching, and question-building interventions, aligned with local cultures and clinical practices, should be adopted.
Patient-focused outcome measures, such as PROMs, should be actively used to gain a complete picture of the patient; data points could be further harnessed for advanced, personalized shared decision-making initiatives.
Tactical Level: Process and Practice
Information strategies (i.e., functions and measures) should be closely supported by a team of health care providers, information technologists, and data analysts to ensure consistency of information flows.
Information processes should be evolved through cycles of performance improvement, outcomes research, and constructive feedback from health care providers on the front line and patients themselves.
A culture for balanced flow of information, particularly from patients to providers, should be maintained with practical initiatives and support from clinical and patient champions across an enterprise.
Clinical Level: Care Delivery and Decision-Making
Effective information flow requires high-quality communication, which includes listening as well as talking. Health care providers should not assume that these skills come naturally. Formal communication skills training is increasingly recognized as valuable for improving patient experience and engagement; indeed, some institutions (e.g., Texas Children’s Hospital, Cleveland Clinic) now mandate communication skills training for all physicians.
But improvement in the way information is captured by individual clinicians is only part of the story; information is best captured in teams. Benefits of team-based approaches are being realized in IPUs such as those at the UT Health Austin Musculoskeletal Institute at Dell Medical School. Multidisciplinary teams of health care providers from surgeons to psychologists, social workers, and nutritionists deliver care around the physical as well as emotional and social needs of patients at the front lines. Such integrated models of care are designed to enable regular interactions between multidisciplinary team members and create an environment where insights, observations, and measured information can be shared more effectively.
PROs are actively incorporated in this effort throughout team discussions and activities and form part of the day-to-day health care language — from being used to organize care and gain a picture of the patient before walking into the clinic room, to tracking patient progress and making clinical decisions. Patients with severe knee radiographic osteoarthritis may have low knee injury and osteoarthritis outcome scores but also demonstrate presence of depressive disorder with high patient health questionnaire scores, indicating the need for further emotional support. Not addressing the complete picture, especially psychosocial well-being, skews the direction of travel with decision-making and deciding the right intervention for a particular patient at that time. The outcomes of surgical interventions, such as total joint replacement, may also be in the balance if all needs aren’t assessed.
Taking this a step further and encouraging patients to become partners in the decision-making process is often referred to as shared decision-making — a concept where clear, accurate, and unbiased medical information (including treatment burdens, risks, and benefits), are conveyed using expert communication to facilitate informed, appropriate decisions tailored to the patient’s needs and preferences. By definition, the concept aims to lessen both primary and secondary information asymmetry. This may be achieved by incorporating shared decision-making principles during consultations through the utilization of decision aids — tools ranging from simple, paper-based exercises to advanced digital solutions using machine/deep learning. PROs along with clinical and demographic data are being applied to machine learning predictive models to generate tailored, patient-specific risk:benefit profiles, complication rates, and likelihood of improvement in quality of life, pain, and achieving clinically meaningful improvements.
A further example of enhancing care delivery through capturing patient-derived data is seen at Kaiser Permanente and other organizations that are now collecting physical activity as a vital sign. Before the patient sees a physician, they are asked two questions: (1) On average, how many days per week do you engage in moderate to strenuous exercise (like a brisk walk)? And (2) On average, how many minutes a day do you exercise? Those data are available for the physician during the encounter, along with blood pressure and weight. Gauging a patient’s level of physical activity is also likely to provide a lens into their psychological health with growing evidence for the strong association between emotional health and physical limitations. Future efforts may focus on scaling the passive collection of patient data, e.g., via smartphones and GPS tracking, using mobility and digital activity as a surrogate for quality of life and living with a painful condition.
Tactical Level: Process and Practice
Health care systems should create an information strategy defined around functions relevant to the health care system and sets of enabling measures and tools. Functions include the use of information for patient-centered assessment following interventions and during recovery (e.g., tracking and monitoring using PROMs); screening and diagnosis (e.g., using psychological PROMs to detect conditions such as depression); decision support (e.g., using PROMs to trigger specialist referrals and decide upon treatments); population segmentation (e.g., using PAMs to stratify level of patient engagement with their health); and performance measurement and quality improvement (e.g., using PRO-PMs and PREMs). A suite of measures (i.e., PROMs, PREMs, and PAMs) and tools (i.e., decision aids, goal-setting exercises, question-building interventions) that may be enabled by technologies can then be integrated within clinical workflows. A dedicated team of health care providers, information technologists, and data analysts with an information champion is needed for systematic and consistent flow of information for this strategy to work.
Information asymmetry is a dynamic entity, and a set of evolving processes will likely benefit from cycles of quality improvement, parallel outcomes research efforts, and constructive feedback from health care providers on the front line and patients themselves.
Building a culture that recognizes the importance of maintaining a balanced flow of information, especially centered around patients, and the promise of minimizing these asymmetries is essential. This balancing act requires leaders at the process and practice level to support transformation efforts, as well as clinical champions to maintain simple yet powerful, practical initiatives across an enterprise. At University of Texas Health Austin, the importance of PRO measures and their completion during follow-up is encouraged by the health care team from the concierge staff to surgeons and therapists. Patients are sent automated messages via the EHR inviting them to complete PROMs in advance of their appointment or are otherwise provided questionnaires on handheld digital tablets on arrival in clinic. A quality improvement strategy includes reminders by team members during new and follow-up consultations, development of visuals and signage about PROMs and their value, and a dedicated team for follow-up calls.
Listen to Your Patient . . .
At the end of the 19th century, Sir William Osler taught his students “Listen to your patient; he’s telling you the diagnosis.” That was in an era when there was little clinicians could do to change the natural history of most diseases, and an excellent physician was one who could make the correct diagnosis, predict the likely course, and ease suffering from symptoms.
Today, our ability to make the correct diagnosis is augmented by patient-reported information and enhanced by technology — these data promise to tell us the likely course, predict future outcomes, and enable us to initiate a range of powerful therapies that do much more than relieve symptoms or purely eke out as many days of life as possible, but rather are focused on improving the health and well-being of our patients.
While Osler’s famous quote seems a quaint and historical relic, perhaps it should be simplified to read: “Listen to your patient; she’s telling you what to do.”