In 2020, CPR started its work with the NY Health Foundation (NYHealth) to track the state’s progress toward creating an environment that empowers consumers, while shining a light on areas of the health care system that support consumers and where the system must improve. The project involved creating a ‘first of its kind’ consumer empowerment scorecard with metrics that measured how New York performed. Over the course of the next two years, CPR and NYHealth worked to identify measures and the results were both insightful and surprising.
To understand the most salient issues in assessing whether consumers are (or feel) empowered, CPR convened an advisory committee representing consumers, health care purchasers, health plans, and health care providers. Consumer groups on the committee represented the interests of diverse patient populations, including Medicare enrollees, immigrant communities, and patients with disabilities. With input from committee members, six domains or topic areas especially pertinent to consumer empowerment emerged: access, care partner support, consumer partnership, equity, system accountability, and transparency. These topics helped guide our research to identify metrics that track whether consumers are empowered.
In addition to the work of the advisory committee, CPR and the Institute for Patient and Family-Centered Care (IPFCC) conducted two virtual focus groups with New York health care consumers. The purpose of the focus groups was to develop a better understanding of how consumers themselves define and understand “consumer empowerment”.
Our work with the committee and focus groups led to the following conclusions regarding key facets of consumer empowerment:
Access means patients receive health care services in a timely manner and in an appropriate setting to achieve the best outcomes. It also considers the cost and affordability of care, cultural competence of care, the adequacy of the provider networks, consumer health literacy, and social determinants of health. Focus group participants noted that access is multi-faceted, touching on cost, health insurance coverage, and equity. Participants expressed the desire for a health care system that “has no barriers,” and “is accessible to everyone without exception.” “Good” health care access is being able to find and see high-quality health care providers, and the ability to get care that is convenient and timely.
Consumer partnership ensures that consumers have a voice in matters that affect them, they are heard, and their concerns are addressed. Focus group participants most frequently described partnership as being able to participate in conversations about their care and decisions they needed to make. Partnership includes developing a relationship with a provider who has respect for patients; providers can do this by encouraging, acknowledging, and valuing patient and family input.
Care partner support involves a health care system that empowers care partners via formal recognition of their role in the patient’s medical record. It also means having hospital policies that allow care partners to be more involved in a patient’s care. Focus group participants stressed the importance of care partners by noting that when patients are “doing their worst or feeling their worst,” they are “most vulnerable” and not fully able to participate in or manage their care – that is why care partners must be informed about the patient’s diagnosis and care plan to enable them to assume responsibility for the patient’s care when necessary.
System accountability reflects a health care system that empowers consumers and holds itself accountable for the cost, quality, and equity of the care it provides. There must be mechanisms in place to hold health care professionals, delivery systems, health plans and others accountable to laws, regulations, and commitments to high-quality care and outcomes. Focus group participants defined accountability in terms of errors and problems, and most frequently described accountability as the system accepting responsibility for – and working to correct – mistakes in care and billing practices. Participants also attributed the view that ‘it’s easier to place expectations on patients and families’ as one of the reasons for the lack of accountability in the health care system.
Transparency in the health care system facilitates consumers’ access to their own health information, provides actionable information about the cost and quality of providers, and ensures prices and financial aid information is readily available to all consumers. Focus group participants described transparency at all levels of the health care system. While this includes access to clinical and financial data regarding care, providers should also be clear and direct about diagnoses and provide complete and accurate information about potential treatment options, along with the risks and benefits of each option.
Health equity means everyone has a fair and just opportunity to attain their highest level of health. Multiple factors influence whether patients receive evidence-based, high-quality health care such that they can achieve equitable health outcomes, including implicit bias and discriminatory practices among health care providers, along with consumer mistrust of the health care system. Social determinants of health are also a factor. Focus group participants described an equitable health care system as everyone having “common ground and equal access to health care services,” being “treated all the same,” and “experiencing freedom from discrimination and assumptions.” Notably, a lack of equity affects consumers’ confidence in the health care system and the ability to get care.
Ultimately, this project 1) identified the key domains by which to measure consumer empowerment and 2) gained an in-depth understanding of what being empowered means to diverse consumers. However, the search to identify metrics of consumer empowerment within these domains proved challenging. The general paucity of measures to assess these areas due to the lack of infrastructure to collect such data, or finding data that once existed but is no longer tracked, was surprising. Many of the ideal metrics identified by the advisory committee did not exist. While there were other measures that could serve as a proxy to ideal data, they did not reflect what the project identified as “true measures” of consumer empowerment.
While disheartening, the lack of data should spur a call to action to the policymakers and the health care industry to do more to make it possible to track progress on consumer empowerment. There are many opportunities to define and create new measures and to gauge consumer empowerment in all states.
CPR has laid the groundwork identify a set of measures truly reflective of consumer empowerment. So, do you know how your state measures up when it comes to fostering an environment that empowers consumers? We bet you’d be surprised.