(Last year, the Robert Wood Johnson Foundation launched a joint initiative with Community Catalyst called the Value Advocacy Project (VAP). The project is supporting consumer health advocacy organizations in six states in their non-lobbying advocacy efforts to pursue local and state policy and health system changes that increase the value of health care by improving health outcomes and lowering health care costs, especially for populations that have disproportionately poor outcomes. Building on the Center for Consumer Engagement in Health Innovation’s recently released Consumer Policy Platform for Health System Transformation, we will be highlighting our state partners working on issues outlined in the policy platform and encouraging them to share how their work can translate to advocates’ efforts across the country.)

New York is in the midst of massive changes to its health care system – within five years, the state expects that 80 percent of residents will receive care under a value-based payment scheme and have access to an Advanced Primary Care practice, modeled on the patient-centered medical home. Value-based payments and advanced primary care are both strategies meant to reduce avoidable hospital use. New York traditionally performs poorly on hospitalization measures – for example, we have some of the worst admissions rates in the country for children and people who have been recently discharged into nursing homes.

New York has two federal funding streams guiding these changes: a.) the State Innovation Model (SIM) Testing grant and b.) the Delivery System Reform Incentive Payment Program (DSRIP), part of an $8 billion Medicaid waiver. Both initiatives are being developed through workgroups, which include some consumer advocates. However, consumers need support and organization to effectively engage in this work. Industry leaders have greater resources to devote to influencing policy than consumers and consumer groups, including money, time and technical expertise. Everyone shares the goal of reducing avoidable hospitalizations. But the strategies developed to achieve it will not succeed if they do not work for consumers. Consumer voices have to be front and center in designing and implementing these strategies. 

Over the next year, Health Care for All New York’s (HCFANY) value advocacy work will focus on educating and organizing consumers according to the following principles (you can see our full set of principles for consumer-friendly health transformation here). 

  • Quality Outcomes. HCFANY will continue to advocate for publicly reported quality measures and for using patient experiences to evaluate delivery reform efforts. Part of this work will include a publication describing how quality measures should be used to measure and reduce disparities – no reform effort should be considered successful unless every community benefits. Without active monitoring, delivery system transformation could even make disparities worse. We are also looking at the opportunities and challenges presented by health transformation for different groups of people – for example, children.   
  • Patient Engagement. Patient engagement should mean providing patients with all of the tools and information they need to advocate for their own care. For example, we’re tracking efforts to improve price transparency and advocating for meaningful care plans for all patients. We’re also developing scorecards that measure how well Performing Provider Systems (part of DSRIP) and Advanced Primary Care practices (happening through SIM) incorporate consumer voices into governance structures and inform consumers about provider incentives.
  • Consumer Leadership. To help create balance between consumers, payers and providers, HCFANY is developing a forum for consumers and advocates who are participating in payment and delivery system reform planning groups. The forum will be a way for the state’s consumer groups to share the burden of this participation and receive technical assistance.
  • Access to Care. Part of our work will focus on consumers’ existing rights and the adaptions that might be needed as the health system changes. New York State already has a managed care and hospital bill of rights, but these were written for the old way of conducting business. We will identify the shortcomings of our existing bill of rights documents, re-assert patients’ rights in new settings and develop a new bill of rights document or set of principles that protects consumers in value-based payment arrangements.

Many of our challenges will overlap with the challenges experienced in other states. Wide-scale use of value-based payments is untested. There may be many benefits for consumers, but there will undoubtedly also be new problems that cannot be fully anticipated. HCFANY is looking forward to sharing what we learn this year with other advocates through publications and conversations, and to learning from them.

Author: Amanda Dunker, Policy Associate, Community Service Society of New York