Last Thursday, Not Dead Yet was one of “over 70 individual patients and patient organizations” that joined the Partnership to Improve Patient Care (PIPC) in a letter to the Department of Health and Human Services (HHS), calling for recognition of us as stakeholders in the Better, Smarter, Healthier initiative and in the Health Care Payment Learning and Action Network. In fact, NDY was concerned enough to send our own letter as well.
PIPC issued a statement describing the need for the letter, in part, as follows:
While most patient stakeholders agree that paying for “value” rather than “volume” will result in better outcomes for patients, the shift to value-based payment holds significant implications for the patient-centeredness movement and the related issues of patient access and the physician-patient relationship. That’s why it’s important that patients have a seat at the table in determining how these new payment models are implemented.
The PIPC letter to Secretary Burwell hints that the initial invitations may not have included appropriate “patient” groups:
The pivotal shift to value-based payment holds significant implications for the patient-centeredness movement and the related issues of patient access and the physician-patient relationship. Patients’ voices need to be a part of this discussion. Therefore, we urge you to recognize patients as key stakeholders in this discussion, beginning with including patients within the Health Care Payment Learning and Action Network that will accelerate the transition to alternative payment models. Organizations representing patients and people with disabilities could provide a unique and valuable voice, in addition to the voices of state representatives, insurers, providers, business leaders and consumers whose participation has already been solicited. (Emphasis added.)
The next day, Not Dead Yet sent our own letter to Secretary Burwell, emphasizing three points:
1) Including “patients” among the stakeholders requires more than a token representation of the broad and diverse population of health care consumers. We are specifically concerned that people with disabilities and chronic health conditions are adequately represented in the process. While family members and disability-related professionals should also be included, such individuals and related organizations do not substitute for people with disabilities and the organizations that are run by us.
2) It is essential that the initiative develop approaches that put individual patient self-determination as the top priority in establishing the value of health care treatments. PIPC rightly points out that a risk in alternative payment models based on “value” is that “value” may be defined in a “one size fits all” manner that does not recognize differences among patients . . .. The urgency of avoiding this error cannot be overstated. If the bottom line is a system that determines value based on “majority rule”, that system will fail to meet the needs of individuals and will violate the core principles of self-determination.
3) There is a risk that definitions of value that have previously been posited by self-appointed “bioethicists” will be foisted upon the stakeholders. Concepts such as “quality adjusted life years” and “disability adjusted life years” inherently devalue people with disabilities and chronic conditions and should not be used as a basis for the work of the initiative.
The full NDY letter is available here.