1. PIPC: Oncology Roundtable Summary and Recommendations, click here to view the summary.
2. PIPC Chairman Coelho: Patient-Centeredness, Comparative Effectiveness, and Value, click here to view the op-ed.
3. LAN Seeks Feedback on APM Framework White Paper, click here to view the white paper.
4. LAN: Updates from Population Based Payment (PBP) and Clinical Episodes Payment (CEP) Work Groups, see details below.
5. The Hepatitis C Education and Support Group Assistance Program, click here for details.
6. Briefing: Breaking Down Barriers to Life-Saving Treatments, click here for details.
7. New PCORI Guidelines for Research on Rare Diseases, click here to view the blog.
The Partnership to Improve Patient Care (PIPC) and the Cancer Support Community (CSC) convened a roundtable on July 8, 2015 on “Patient-Driven Health Care and Evidence in Oncology: Setting an Agenda.” The roundtable participants represented patient organizations serving cancer patients, as well as a representative from the Patient-Centered Outcomes Research Institute (PCORI). Roundtable participants discussed the outcomes that matter to oncology patients and policies that would support high-quality, patient-driven cancer care.
As a result of the roundtable, the group developed consensus around a series of recommendations for policymakers, researchers and payers. The summary below refers to policymakers in the context of those working in federal government to influence health care policies, Members of Congress and their staff, agencies within the Department of Health and Human Services (HHS), particularly the Centers for Medicare and Medicaid Services (CMS), entities acting in an advisory capacity such as the National Quality Forum (NQF), and contractors hired to implement health care programs, particularly payers contracting with CMS as alternative payment models (APMs).
The roundtable served as a call to action for patient organizations to determine a guiding set of principles for the cancer patient communities that they represent, reflecting their priorities for public policy as the healthcare system shifts away from a fee-for-service (FFS) model to APMs that reward providers based on their ability to achieve “value.” It was agreed that the calculus used by some organizations to define “value” does not necessarily represent value to a patient. Therefore, it is vital for patients to come together around a core set of policy recommendations that will better achieve outcomes that matter to patients.
The full roundtable summary, including the policy recommendations advanced by the panel, is available here.
2. PIPC Chairman Coelho: Patient-Centeredness, Comparative Effectiveness, and Value
As PIPC Chairman Tony Coelho commented in a Roll Call op-ed last week: “After five years of progress towards patient-centered comparative effectiveness research (CER), the Center for American Progress (CAP) threatens to unwind it by reviving the old debate over using CER to control medical spending. 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.”
“…While CAP is seeking to address an important issue – affordability – its proposals to focus CER on payer needs would have serious, negative consequences for patients. First, it relies on methods such as those used by the Institute for Clinical and Economic Review (ICER), which uses cost-effectiveness standards and payer-focused budgeting as the basis for making average determinations about the value of treatments. Far from an independent, patient-centered approach, ICER’s model represents a non-transparent process with little or no patient input or review of its potential impact on care. Second, it threatens to refocus the work of the Patient-Centered Outcomes Research Institute (PCORI) to make national payment policy recommendations based on average value assessments. Yet, no patient is average.
“….So we again face a choice. Will we continue conduct CER to support patient needs and the science of personalized and “precision” medicine, or are we going back to the paternalistic days of patting patients on the head, telling them to take two pills and call back in the morning. I cannot imagine patients want to be sidelined in their own care decisions based on centralized value assessments from CER studies that are meaningless to them personally. We’ve come too far in building the research and innovation infrastructure that enables personalized decisions to throw it all away because we do not systematically believe patients should be driving their own care. As PIPC’s Chairman and a patient with a disability myself, I would urge policymakers to move forward – not backward – and to embrace the ideals of patient-centered, personalized medicine.”
Click here to view the op-ed.
3. LAN Seeks Feedback on APM Framework White Paper
The Healthcare Payment Learning and Action Network’s (LAN) Alternative Payment Model Framework and Progress Tracking (APM FPT) Work Group is soliciting feedback on their APM Framework Draft White Paper by November 20, 2015. “The White Paper describes the approach that the work group used to develop the proposed APM Framework and delineates and describes principles upon which the APM Framework is based. With these principles in mind, the paper differentiates the categories within the APM Framework, by explaining how the categories are described, and where the boundaries between them lie. In order to further clarify the classification of individual APMs, case studies will be used to exemplify each of the categories and subcategories in the APM Framework, with a starting set included in the appendix. Information and positions taken in this document should be considered preliminary until the Work Group receives input from the LAN and releases a final version of the White Paper. Future iterations of the White Paper will include an Executive Summary and a conclusion that summarizes the Work Group’s key findings and implementation goals.” “[Stakeholder] comments will help to refine the final White Paper, which is targeted for release later this year. In particular, the work group is seeking feedback on:
the overall White Paper and proposed framework; descriptions associated with each category; the boundaries that differentiate one category from another; and additional examples and case studies you could provide to illustrate and test each category in the framework.The APM FPT Work Group will be collecting feedback:
via the LAN Learnings webinar Tuesday, November 10th; online through a discussion forum on Handshake; and by email directly to PaymentNetwork@MITRE.org.Click here to view the white paper.
4. LAN: Updates from Population Based Payment (PBP) and Clinical Episodes Payment (CEP) Work Groups
Last Wednesday, the Healthcare Payment Learning and Action Network’s (LAN) PBP Work Group held their kickoff meeting. The meeting agenda focused on introducing group members, orienting members to the LAN and discussing the charge of the work group. A majority of the meeting was devoted to planning for upcoming activities including reviewing proposed focus areas (patient attribution, financial benchmarking, quality measurement and data sharing). Members agreed on a goal to identify best practices for accelerating adoption of PBP models that improve quality, patient experience, and health status, while keeping in mind differences in communities, markets, and governance structure. A member roster is posted on the LAN Website.
Additionally, Lewis G. Sandy, MD, MBA, has been named chair of the Clinical Episodes Payment (CEP) Work Group. Dr. Sandy is Senior Vice President, Clinical Advancement, at UnitedHealth Group. His work focuses on clinical innovation, payment/delivery reforms to modernize the health care system, and physician collaboration. He also is a principal in the UnitedHealth Center for Health Reform and Modernization, with a focus on payment/delivery innovation and policy.
5. The Hepatitis C Education and Support Group Assistance Program
The Hepatitis C Mentor and Support Group, Inc. was formed to address the lack of supportive services for people living with Hepatitis C, including patients Co-infected with other conditions such as, HCV/HIV and Pre/Post Liver transplant. The founder is a Hepatitis C patient and advocate. To meet the organization’s goal, the Hepatitis C Education and Support Group Assistance Program was established to provide resources and services nationwide to hospitals, clinics, other organizations, including substance abuse communities and individuals wanting to establish or run Hepatitis C, Co-infection HCV/HIV, and Pre/Post liver transplant patient support groups. These services are provided free of charge. The services include:
Training and training materials on support group meeting facilitation, education on HCV and Coinfection, as well as the importance of advocacy.Tele-Support: The same training as above only provided via conference call. This has proven to be needed where it is logistically not possible to be, for those in rural areas or for those who cannot attend in person. This will fill various needs, such as trainings for facilitators and groups for patients in areas where there is no support and education available.A roster of experts to speak at support group meetings on topics such as Hepatitis C, Coinfection, treatment research findings, drugs in development, navigating insurance, nutrition, relaxation, and other lifestyle issues.An informational website (www.hepatitisCmsg.org), provides a blog, and social media updates to help facilitators, medical advisors and patients stay up-to-date on other Hepatitis C-related sites, reports and conference highlights, disease and treatment research, drugs in development, training and advocacy opportunities, and other topics of interest. The website includes a list of all Hepatitis C support groups in New York State. It also includes information on programs to help uninsured or underinsured patients get treatment drugs at reduced or no cost.HCMSG Patient Support Newsletter helps to prepare patients by providing them with types of questions to ask their medical providers, definitions of medical terms, resources such as patient assistance programs, and up to date information on new and upcoming treatments provided by medical advisors from leading New York hospitals.Meetings and conference calls with medical providers and support group facilitators to share information, resources and best practices.
The Hepatitis C Education and Support Group Assistance Program acts as a central hub for Hepatitis C support group facilitators to provide accurate and up-to-date information and facilitate the sharing of resources and skills. For more information about these services, click here or contact Ronni Marks (firstname.lastname@example.org) at 917-612-2731.
6. Briefing: Breaking Down Barriers to Life-Saving Treatments
On Tuesday, November 17 from 12 – 1:15 pm, join the American Autoimmune Related Diseases Association and the National Coalition of Autoimmune Patient Groups for a briefing addressing the patient access issues of step therapy, cost sharing and specialty tiers. The briefing, entitled ‘Breaking Down Barriers to Life-Saving Treatments,’ will be held in Cannon House Office Building, Room 122. Click here to RSVP for the event.
7. New PCORI Guidelines for Research on Rare Diseases
In a new post on The PCORI Blog, PCORI’s Emma Djabali, Danielle Whicher, PhD, MHS and Ayodola Anise, MHS, comment, “to demonstrate our commitment to research on rare disease, last February we announced a special pool of funding, $12 million awarded through our broad PCORI Funding Announcements (PFAs), for studies that focus on rare diseases...Over this time period, we received a number of questions regarding what types of projects on rare diseases align with our mission and vision. To address these questions, we have now developed a formal guidance to advise the research community.” Click here to view the blog.