Regardless of the outcome of the current health reform debate, patients are likely to continue to be asked to take more responsibility for their health care, whether through high-deductible health plans, health savings accounts, or other mechanisms. From a pragmatic perspective, it is time to shift the discussion toward helping patients understand what value actually means in choosing their health care and discharging their financial responsibilities. Any plan that is enacted, whether a full replacement of the Affordable Care Act or “fine-tuning” of the law, will likely require that patients make decisions about what constitutes value. At least two things need to happen to help people meet this challenge.

First, we need to begin actively incorporating the patient perspective into the measures we use to assess value in health care. As we define value—and much work remains to be done in that area—we must be sure that value assessments adopt the patient perspective. Assessments must be salient to the decisions that patients make in choosing and using health care. Individuals with chronic or preexisting conditions, for example, will have different priorities than healthy young people whose focus may be on preventive or primary care.

Second, as we develop better data on value, we have to communicate these findings to the people making decisions in ways that facilitate value-based, shared decision making between patients and providers.

Incorporating The Patient Perspective

Economics, the science of measuring value, holds that the value of any good rests in the eye of its consumers. In health care, this has meant that value is defined by how patients perceive it, rather than by how much they actually pay for the services they receive. Unlike other markets, health care features payment arrangements that separate consumers from payers. This would remain true even in a world of high-deductible health plans.

As the 2nd Panel on Cost-Effectiveness in Health and Medicine has recognized in its guidelines for researchers, this separation between consumers and payers calls for a “societal” approach to value that aggregates all the benefits and costs associated with a particular therapy. For instance, costs to family members, caregivers, and employers should be included in a “societal” perspective, along with the costs to a third-party payer. Health care benefits a wide range of stakeholders, but patients overwhelmingly view the benefits that flow to them as individuals to be of primary importance. Thus, rigorous economic analysis argues for including the patient perspective in any assessment of how new medical technologies benefit society.

If our goal is to create a well-functioning and competitive market for insurance, that too will revolve around patient perspectives. Firms succeed in competitive markets when they best meet the needs of their customers. Therefore, if health insurance reform succeeds in building more competitive markets in which consumers can directly choose from an array of options, payers will view patient preference as more salient to their own business decisions.

Incorporating patient preference may be easier said than done, but there are several concrete, feasible steps we can take. Better methods and processes would be a good start. As the 2nd Panel on Cost-Effectiveness emphasizes, health technology assessment does not always include the full range of outcomes that patients care about. These include lost time and productivity in the workplace, burden on family and caregivers, and the loss of ability to enjoy other activities and forms of consumption.

The Only Way To Find Out What Matters To Patients Is To Ask Them

Systematic collection and inclusion of data on patient preference should be part of patient-centered assessment of value. This can be done via surveys, focus groups, and analysis of behavioral-based preferences. This evidence is important, for example, in revealing what attributes patients care most about—safety, efficacy, route of administration, dosing frequency, side effects, and so on. It can even shed light on how much value patients place on each of these attributes; for example, cutting dosing in half and reducing side effects or cost may be as valuable as an “X” percent improvement in efficacy. This kind of evidence produces a more rigorous estimate of how patients value the entire portfolio of attributes that make up a medical intervention, not just its efficacy and direct costs.

Patients can also play a key role in designing and steering research from its inception. This provides another important avenue to assessing and including the patient perspective.

Finally, we can draw insight from psychology and economics to help align our models with real patients and the values they care about most. Patients, for example, rarely focus on average outcomes. They also care about the opportunities to do better or the risks of doing worse than expected. They tend not to focus single-mindedly on the one health care decision in front of them at any given moment. They often consider how today’s decision will either unlock or foreclose opportunities for them to live well into the future.

If You’ve Seen One Patient, You’ve Seen One Patient

Any approach to patient-centric care must grapple with the reality that patients, even those facing very similar situations, differ in their health care preferences and values. Typical approaches to value assessment often seek a common denominator or produce a single determination of value. This may be relevant to payers who need to make a single coverage decision at the population level, but it is much less helpful to individuals who must decide whether and how to allocate their time, effort, and financial resources.

To be useful, we need to find ways of tailoring value assessment to the preferences and circumstances of individual patients—what matters to that person at that time. To that end, we need to do a much better job of providing patients with more timely, usable information about their financial responsibility. This means patients need information in advance not only about the potential benefits and side effects of treatment alternatives but also about the copayments, deductibles, and other financial obligations associated with those alternatives. Transparency is key to developing better health care consumers capable of making wise decisions.

Informing Patient Decisions

After generating patient-centered information about value, the next critical step is getting this information into the hands and heads of diverse groups of patients. Several vehicles we depend on to disseminate new information—for instance, peer-reviewed journals and academic meetings—often do not advance the cause of informing patients. We need to develop tools that support patient decision making about value in the real world and help to fill this gap.

Some tools are already available—for instance, the Agency for Healthcare Research and Quality’s Question Builder platform, the PREPARE tool for advance care planning, or the suite of ArthritisPower tools. The problem is that patients face a fragmented landscape littered with an array of different tools. Many use different approaches, or language, and demand different types of interaction. They may require higher levels of health literacy or may not address the core issues of what most matters to patients in ways that can be applied to actual decisions. They may omit key areas, such as supportive or palliative care, or clinical trials, or neglect to recognize cultural and social differences that inform patient decision making.

Even when these tools are employed, there are gaps in our understanding of how to measure their usefulness. Patient, provider, and research organizations have begun to fill these gaps by developing criteria that help measure the success of patient decision support tools. These efforts are helping to ensure that decision tools meet basic standards of usability, clarity, and accessibility.

To be useful and effective in assessing patient-centered value, tools must take into account the interdependence of patients with their physicians and their insurers. They cannot be separated from the ongoing communication and decision-making process, they must be integral to it—and they need not be complicated or time consuming. As with all effective communications, shared decision making requires skills, both on the part of the patient and the provider, that must be identified and taught to all stakeholders. One or two questions posed by the health care provider that explore what matters to the patient and caregiver can open the doors to a process of shared decision making.

An Interactive, Web-Based Tool

While the relationship of patients to their physicians and other care providers is the heart and soul of patient-centric care, the process of assessing patient values is fertile ground for new tools that use technology. Imagine, for example, an interactive, web-based tool that allows a patient to take a short, succinct survey of preferences about treatment decisions. It might reveal that this patient places the most weight on safety or minimizing side effects over maximum effectiveness, or the opposite. It could indicate that life issues, such as transportation or availability of supportive care, are significant factors in making a decision. It could reveal gaps in care and promote more focused discussions with the health care team.

This simple tool could help the patient think about his or her preferences and translate those values into actual shared decisions about ranking treatment options. From the provider’s perspective, such patient input complements and enhances, rather than supplanting, clinical expertise.

Payers And A Patient-Centric Approach

What about the payers? They too can both facilitate and benefit from this patient-centered approach. Payers rightly maintain that strict formularies guard against prescribing patterns that fly in the face of clinical guidelines, but the alternative to a strict formulary does not have to have an entirely hands-off approach. It is possible to develop flexible formularies that list clinically justifiable therapies as a function of patients’ clinical characteristics and preferences.

A range of therapies might be clinically indicated for a given patient, but they may vary on non-clinical dimensions that matter to them. For instance, some treatment options may require less travel, such as an oral medication versus radiation treatment or surgical treatment versus continuing medical management. Others might possess a lower toxicity profile and fewer side effects, such as fatigue, nausea, pain, or neuropathy. And, some treatments might offer more certain short-term survival benefits, while others offer a riskier bet on the possibility of a longer-term gain. A flexible formulary might allow patients and their physicians to choose among these clinically valid therapies that nonetheless differ in ways that matter to the patient. In this way, the “guard rails” stay up around evidence-based care but become more aligned with the patient experience.

These flexible approaches do represent a new approach to designing formularies, but go hand in hand with a world that is increasingly placing more financial responsibility on patients and the providers who treat them. If we are moving toward a system in which patients bear a greater financial burden, it is only reasonable that their preferences and values be better represented in coverage decisions.

Ultimately, a patient-centered approach to assessing value serves every stakeholder in the health care Marketplace. Providers can better meet the needs of their patients. Payers will compete more successfully by producing higher levels of patient satisfaction, and policy makers will benefit from Marketplace decisions that align more closely with value.

Author’s Note

This research was funded through the Innovation and Value Initiative, a multistakeholder research initiative that is part of Precision Health Economics (PHE). In addition to his academic appointment, Darius Lakdawalla is co-founder and chief scientific officer at PHE, a health economics consultancy to the life science industry.