As Chairman of the Partnership to Improve Patient Care (PIPC), I have seen tremendous progress in the patient-centeredness movement, particularly in changing the culture of medical research. Yet, our leaders should know that we still have a long way to go to give patients, people with disabilities, veterans and caregivers a voice in how we deliver care that patients value. They deserve a seat at the table in any discussion of health care policy, as well as meaningful opportunities to voice their unique and real experiences
By: Janni Lehrer-Stein
I learned recently, many weeks after its early June announcement, that the Institute for Clinical Economic Review (ICER) based in Boston will develop a report assessing the cost effectiveness of a new cure for blindness, a gene therapy for vision loss associated with a form of retinal disease. By the time I learned about it, the comment period had closed to allow stakeholders to share key information relevant to the first phase of development of the evidence report. While ICER said it would contact key patient groups and clinical experts to gain further insights on the patient perspective and clinical context of this new treatment option, I had never heard about it when I could have had a voice in the initial phase of the study. It’s not clear how hard they worked to get the patient perspective, and I certainly have a perspective to share
In an op-ed published in RealClearHealth, PIPC Chairman Tony Coelho examines the limitations of quality-adjusted-life-years (QALYs) and how this tools for value-assessment may systematically discriminate against patients and individuals with disabilities. As he writes, "Underlying all this is the key question we must ask ourselves when considering any policy related to the payment and delivery of health care: for whom are we creating this policy? Who is the ultimate stakeholder? If the answer is not the people served by health systems -- patients and people with disabilities -- then we have a serious problem."
Chairman's Corner: Patient Voices, Patient Value: Stepping Out of the Ivory Towers into the Real World
In a blog published by The Huffington Post, Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho urged members of the new Congress and new administration to listen to real patients and embrace health care solutions for that cater to all patients, caregivers and people with disabilities. "Patients wanted a voice in research and in health care policymaking, because, too often, traditional research is irrelevant to the goals we have for our health and our lives," Coelho wrote. Coehlo also noted that while Congress continues to focus on improving the "value" of healthcare, it is crucial for patients to have a voice in defining this value in their healthcare plans.
As a new president prepares to assume office in January, the continuing evolution of our health care delivery system — from a traditional fee-for-service payment system to a more “value-based” payment arrangement — shows no signs of slowing down.
Given the emphasis being placed on the “value of care” — who defines “value,” how the “value” of individual patient care is being judged and applied and how this assessment could deny access to treatments or services — is what motivated Lung Cancer Alliance and more than 60 groups representing patients and people served by health systems, to write an open letter to state that “value” should first and foremost be considered through the eyes of patients and people with disabilities — who are the ultimate beneficiaries of health care.
In an op-ed published in Morning Consult, Lung Cancer Alliance president and CEO Laurie Fenton Ambrose highlights their participation in a recent Open Letter, in which PIPC and over 60 other healthcare stakeholder joined to state that “value” should first and foremost be considered through the eyes of patients and people with disabilities. As she explains, "Every one of us has individual needs, unique characteristics and personal preferences that factor into our health care decisions. We do not fit neatly into one-size-fits-all models and assessments that can drive certain clinical decisions on benefits, cost and effectiveness of treatments," she notes. "That is why we must have a meaningful role in the discussion of value as only we can offer real world input on what matters to us when faced with medical decisions that impact our quality of life."
The Partnership to Improve Patient Care (PIPC) and over 40 organizations representing patients, people with disabilities and providers submitted a letter to the Institute for Clinical and Economic Review (ICER) in response to their request for input on their value assessment process. In the letter, the organizations stated, “Simply put, if we aren’t paying for care that patients’ value, we aren’t really paying for value-based care.”
Hon. Tony Coelho
PIPC Chairman, Patient Advocate
Proposals for Medicare and private payers to use CER are understandable, but concerning. Understandable because the challenge of rising costs is real, and policy-makers naturally reach for familiar policy tools. Concerning because it would pull CER away from individualized patient decisions and back towards centralized payer decisions. The end result would be limited choice of treatments based on one-size-fits-all determinations of 'value' for the average patient.
As the foundation of the healthcare policy landscape undergoes a tectonic shift that promises to reward “value” in care rather than “volume” of services, stakeholders of all types have cautiously applauded these changes as needed reforms. Yet, when patients see these principles applied – as is the case with a recent Medicare Part B Drug Payment Model – we can’t help but ask: “value to whom?
Health insurers, public and private, should support the provision of care that taxpayers, employers – people – find valuable to optimizing health. However, all too often payer perspectives don’t align with those of patients, caregivers, and clinicians.
In an op-ed published in Morning Consult, Donna Cryer, a President and CEO of the Global Liver Institute, a PIPC member, discusses how ICER's payer-focused perspective could harm patients by limiting patient access to medications. "It is unacceptable when payers, instead of patients and providers, use these reports to drive clinical decision-making based on mathematical assessments of so-called 'average value' – although I’ve never met an 'average' patient," she explains. "It is even more frustrating to think that public programs could sidestep patient protections embedded in the Medicare law through a nationwide 'demonstration project' that would allow these assessments to define treatment value."
Inside Health Policy: Senators Raise Concerns With Part B Drug Pay Demo's Size, Effect On Rural Providers
This morning, Inside Health Policy highlighted the ongoing concerns of senators from both parties over the Centers for Medicare and Medicaid Services (CMS) recent proposal on Part B drug payment. The two-part demonstration would adjust the physician reimbursement formula and use value-based pay arrangements in its second phase.
Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho commented as a part of the article, noting that patient groups “stand ready to work with CMS to develop alternative patient-centered approaches, but CMS’ failure to engage patients from day one has resulted in a deeply flawed proposal.” In a statement, Coelho was also quoted as saying, "CMS stirred up such controversy that they really have no choice but to start over and initiate a new more engaged process so patients are with them and not against them on this."
An article posted today in Inside Health Policy outlines the concerns of patient advocacy groups with the proposed use of value-based assessments in the second phase of the Centers for Medicare and Medicaid Services (CMS) Part B drug pay demo. The second phase specifically involves value-based pay arrangements including the use of discounts or elimination of patient cost-sharing; prescribing patterns; and indications-based pricing.
Representatives from various patient groups offered their concerns. Donna Cryer of the Global Liver Institute criticized the use of the Institute for Clinical and Economic Review (ICER) to help determine a value-based payment framework as the Institute has little engagement with patient groups. Patient advocates have also raised concerns with the Institute's methodology.
I am telling my personal story because on May 26 the Institute for Clinical and Economic Review (ICER), a group that develops cost effectiveness reports for new treatments, held a public meeting in St. Louis about their draft report on the value of multiple myeloma treatments. I feel it is my duty to testify for all patients of this dread disease so that no treatments that demonstrate efficacy should be denied that extend or improve life because of monetary concerns
An article in Healthcare Dive highlights the Partnership to Improve Patient Care (PIPC)'s recent letter to the Centers for Medicare and Medicaid (CMS), which voices their opposition to the agency's Medicare Part B demo. The group expressed concerns over CMS' proposed use of comparative effectiveness research and cost effectiveness as national Medicare standards in phase two of the proposal and urged the agency not to move forward with the proposed rule unless it accommodates people with disabilities.
Libertarian Republic: Proposed Medicare Rule Would Use Metric Banned During Obamacare Death-Panel Debate
An article posted today in The Libertarian Republic highlights the fact that the Centers for Medicare and Medicaid Services' (CMS) recent Medicare Part B demonstration proposal would use a quality-adjusted life years (QALYs) metric for rationing health care, which was banned following the Affordable Care Act (ACA) death-panel debate.
The article also features the concerns of patient advocacy groups, including the Partnership to Improve Patient Care (PIPC), over the demonstration's potential to limit drug access for the elderly and physically disabled. They expressed concern that the QALYs metric fails to take real-life consequences into account - like doctors being pushed toward cheaper yet possible less effective treatment options.