Why 'Value' Matters to Patients

Health insurance companies, Medicare, State agencies all are working rapidly toward "value-based" payment models. But will they pay for care that patients value? 

PIPC was founded on principles of patient-centeredness that cannot be achieved without engaging patients and people with disabilities.  PIPC came together around the creation of the Patient-Centered Outcomes Research Institute (PCORI), and the meaningful engagement of patients in the development of its research agenda and in the conduct of research to reflect outcomes that matter to patients.  We understand that our work does not stop there.  For the transition to a value-based health system to really achieve outcomes that matter to patients, patients must have a seat at the table not only in research, but in the translation of that knowledge into the fabric of our health care payment and delivery system. 

Defining Value to the Patient
PIPC members recognize and appreciate the challenges that lie ahead as patients face one-size-fits-all decisions about their health under the guise of achieving “value”, in contrast to the real value achieved by personalized medicine and tailoring care to individual patients.  We are grateful for the Precision Medicine Initiative, for PCORI, and initiatives like Cancer Moonshot.  We know that value means achieving outcomes that matter to patients and people with disabilities, and we stand ready for fight for new payment and delivery models to reflect their values.

​In determining treatment value, PIPC advocates for:
  • Advancing best practices in shared and supported decision-making, consistent with personalized medicine, to effectively capture value to the patient. These tools should allow patients to understand their treatment options and the impacts of treatments on outcomes they care about most.  This way, patients and providers play a role in improving health outcomes, adherence, and patient safety, while reducing costly adverse events.
  • Eliminating reliance on quality-adjusted-life-years in value assessment. Patients and people with disabilities do not support the use of quality-adjusted-life-years (QALYs) in research and in the assessment of treatment value. This kind of “one-size-fits-all” mentality does not recognize the diversity among patients and people with disabilities. Additionally, a societal impact analysis based in cost-per-QALY may not account for the value of substantially improving the life of a person with a disability or serious medical condition.
  • Recognition of the long-term, personal and societal costs, such as risk of disability and the potential need for caregiving. Broader costs should be considered rather than focusing only on short-term costs to the payer.  
  • Changing the culture of research to embrace the use of patient sources of data so that patients understand the real-world comparative effectiveness of their treatment options on outcomes they care about most. Randomized Clinical Trials (RCTs) provide limited data, representing only a small part of the population and do not represent real-world treatment impacts. Patient data offers insight on real-time treatment value for patients.
  • Identifying the evidence on which value assessments are based, as well as the limitations presented by that data such as the limited populations and outcomes captured by the evidence. Stakeholders should understand the evidence used to develop value assessments, the quality and source of evidence, and the limitations of the evidence. 
  • Engaging patients and people with disabilities in the development of value assessments. It is imperative to proactively reach out to patients, patient advocates and clinical experts for their input, and explain the process through which value assessments are developed. By doing so, assessments would better achieve consensus on the assumptions, definitions and underlying questions.
  • Reflecting patient-centered outcomes in value assessment. Quantifying value in a way that is useful and meaningful to patients and people with disabilities requires a basic understanding of their values and preferences.  Doing so will benefit both patient and payer as they identify and integrate the appropriate patient-centered criteria in assessing the value of treatments for a particular condition. 
  • Avoiding one-size-fits-all value assessments. Assessments that result in a single universal “value score” will not convey the different ways that patient sub-groups, and individual patients, define value. We are concerned that payers use these determinations of value to restrict access to treatments without consideration of the varying value presented by a treatment or technology for the individual patient or person with a disability. Treatments impact patients differently based on their comorbid conditions as well. Value to patients and people with disabilities simply cannot be captured in a single number. 

Patient-Centered
Principles
This issue is playing out in both inside and outside public programs. Most recently, the Centers for Medicare and Medicaid Services (CMS) proposed a new drug payment model – commonly known as the ‘Part B Demonstration’ – that would allow the government to determine the value of certain drug treatments for patients by using one-size-fits-all standards from generalized "comparative effectiveness" research and "cost-effectiveness" data. Contrary to personalized medicine, the government would be steering providers to the treatments that they determine to be “cost effective,” rather than deferring to the judgments of patients and their doctors. It has never been more important for patients, caregivers, and people with disabilities to make their voices heard in this debate.

Private payers are already relying on these one-size-fits-all assessments of value, often making it difficult for patients to access the care they want and need.  Therefore, PIPC and its partners support the use of the National Health Council’s (NHC) Patient-Centered Value Model Rubric by developers of value assessments to mitigate the existing shortcomings of value assessments and tools. The NHC’s rubric already provides a guide to evaluate the patient-centeredness of value models and to guide value model developers on the meaningful incorporation of patient engagement throughout their processes.

​The rubric outlines the domains that must exist for a value framework to be patient-centered: 
  • Patient Partnership. Patients should be involved in every step of the value model development and dissemination process. 
  • Transparency to Patients. The assumptions and inputs into the value model itself – and each step in the process – should be disclosed to patients in an understandable way and in a timely fashion.
  • Inclusiveness of Patients. The value model should reflect perspectives drawn from a broad range of stakeholders, including the patient community. 
  • Diversity of Patients/Populations. The value model should account for differences across patient subpopulations, trajectory of disease, and stage of a patient’s life. 
  • Outcomes Patients Care About. The outcomes integrated into the value model should include those that patients have identified as important and consistent with their goals, aspirations, and experiences. 
  • Patient-Centered Data Sources. The value model should rely on a variety of credible data sources that allow for timely incorporation of new information and account for the diversity of patient populations and patient-centered outcomes, especially those from real-world settings and reported by patients directly. The data sources included should reflect the outcomes most important to patients and capture their experiences to the extent possible.