Patient Engagement

Patient-Reported Data Can Help People Make Better Health Care Choices

Article · March 9, 2016

In health care, value accrues to patients, insurers, and society at large. We believe that patients’ perceptions of value are what really matter and that insurers and society derive more value when patients are served well. For example, a patient considering back surgery for disc herniation wants to know: “How much will this procedure lessen my pain and increase my mobility, when will I see improvement, and how much will this cost?”

But most patients don’t embark on a health care experience with a thorough understanding of available treatment options and their anticipated health outcomes. They need tools to help them make value-based, fully informed decisions about their care. We believe that such tools should be designed with the patient in mind and should use self-reported outcomes data from actual patients, collected in real time, to help other patients anticipate their own course of treatment.

A 2015 Institute of Medicine report, “Core Metrics for Health and Health Care Progress,” demonstrates broad consensus that measuring the quality of people’s health and the care they receive is critical to improving performance of the health care system and patients’ health outcomes. Too often, today’s uncoordinated performance-measurement systems focus primarily on which care processes are used and fail to empower patients to answer the basic question: “How will this treatment decision affect someone like me?” Furthermore, current systems do not compare treatments or providers in a head-to-head fashion. Such comparisons would help patients make better-informed decisions about where to obtain the highest-value care.

The Power of Scale

Adopting electronic medical records on a large scale has the potential to generate a wealth of meaningful data on patient-reported outcomes. These data can be used to track the patient’s trajectory after receiving a particular treatment and to monitor a patient during follow-up. That information can then be used to help future patients decide whether to pursue a similar course of treatment.

To get a sense of the power of patient-reported outcomes data collected on a large scale, consider the Spine Patient Outcomes Research Trial (SPORT). This large national study, conducted from March 2000 to February 2005, enrolled 2,505 patients with disc herniation, spinal stenosis, or degenerative spondylosis. Today, thanks to the huge bolus of data from SPORT, patients with back pain related to those same underlying conditions can enter personal, demographic, and clinical information into an online calculator on Dartmouth’s website. The calculator generates information, from SPORT-derived outcome models, comparing the anticipated outcomes of surgical versus nonsurgical interventions for patients with characteristics similar to their own. They can see projections with respect to post-treatment physical activity, severity of pain, and overall health. The doctor introduces the SPORT tool to the patient during an office visit, and the two of them view the automatically generated results together in real time. In effect, the patient, in direct consultation with his or her physician, gets to answer that crucial question: “How will this treatment decision affect someone like me?”

The Limits of Existing Methods

Patient-centered tools that incorporate easy-to-interpret information on outcomes, associated with specific treatments, can improve the likelihood that patients will choose high-value care. Unfortunately, existing methods of facilitating patient decision-making fail to give patients all the information they need.

Consider the five-star quality rating system of nursing home care developed by the Centers for Medicare and Medicaid Services: It assesses measurements of patient experience and staffing levels, but not other aspects of quality (such as the safety, timeliness, effectiveness, efficiency, and equity of care delivery) — and it does not consider costs at all. Similarly, U.S. News & World Report’s performance-based ranking of hospitals for common surgeries and medical conditions reflects how institutions vary according to patient outcomes, but it does not take other aspects of quality or costs into account.

Currently, no patient-reported outcome tools in the public domain assess all of the important measures of quality in empowering consumers to make fully informed health care decisions. Nor do existing tools estimate treatment-specific out-of-pocket costs, an important but frequently neglected component of clinical decision making. (Notably, at Dartmouth-Hitchcock we offer patients an out-of-pocket cost estimator that patients frequently say they appreciate.)

Including all cost information is crucial for setting patients’ expectations up front as they self-select the best course of treatment for the dollars they will have to spend. In the future, such measures will be used by consumers not only to determine whether to pursue a particular course of treatment but also where to get their care — so-called “comparison shopping.”

Practical Steps

The key to helping patients make informed health care decisions is to give them access to clear, relevant, meaningful information about available treatments, possible outcomes, and care-related costs. Toward that end, several steps must be taken:

  1. The U.S. health care system needs to collect patient-outcomes data in real time as part of the routine of health care delivery. The data then need to be aggregated and validated. We believe that insurers and health plans, which have access to this information, should fund these endeavors, and that their investments will pay off. Benefit packages should reward patients with lower out-of-pocket costs for choosing health systems that use shared decision-making processes and provide high-value care. Such packages will motivate patients to make informed decisions, to seek only the care they want and need, and to choose providers with the best patient outcomes.
  2. We need to build tools that incorporate and analyze data that are meaningful to patients as they consider treatment options — and that serve it up in an easy-to-use, hands-on format. This effort requires an information technology infrastructure that leverages electronic-medical-record platforms, collects data from a variety of health care providers and systems, and generates objective, real-time information on health care value for relevant procedures, diagnoses, and settings. Dartmouth’s SPORT tool is a substantial step in this direction. Since 2011, we have worked with a large IT vendor and others to build a tool that is more advanced than the SPORT tool, which we intend to make available globally, not just to our own patients. Here is a screenshot of one back-pain patient’s results from a preliminary version of the new decision-making tool. For this patient, who is considering surgery for spinal stenosis, the tool shows current physical function well below that of the normal U.S. population, but with an anticipated notable bump in function soon after surgery. However, the physical-function advantage over not having surgery evaporates within eight years.

    Patient Health Tool

    Patient Decision-Making Tool. Click To Enlarge.

  3. In a publicly accountable fashion, we must assess the value of shared decision making as it is implemented in real-world health care settings. That means evaluating the quality of the decision aids that are offered to patients and using validated measures to assess the quality of decisions that patients ultimately make. For example, a patient might be referred to a shared decision-making center (like the one at Dartmouth-Hitchcock), use a validated decision-making tool to help decide whether to pursue a course of treatment, and then complete a validated questionnaire that assesses the quality of the patient’s decision and its consistency with the patient’s values. That assessment information should then be transmitted back to the insurer in order to document the shared decision-making process.
  4. Patient-reported outcome measures and data must be thoroughly integrated into the process of everyday diagnostic and therapeutic decision making. Collecting longitudinal outcomes data after a patient makes a treatment decision is critical to enhancing the quality of future patients’ decisions (as the SPORT tool aims to do). Over time, patients might use those outcome measures to determine which health care systems have the best outcomes and, accordingly, decide where to obtain treatment.

Documenting the alternatives that today’s patients face and the choices they ultimately make is the core aim of using patient-reported outcomes data. Only by collecting relevant options, choices, and health care outcomes for today’s patients can we help future patients make fully informed decisions. This effort is critical for developing a sustainable, transparent health care system that holds providers accountable for costs and outcomes, that provides incentives for improving the health of the population instead of promoting use of more services and expansion of market share, and that encourages patients to seek only the care they want and need.

For more detail about the ideas discussed in this post, see the authors’ book, Unraveled: Prescriptions to Repair a Broken Health Care System (Amazon).

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