1. PIPC Encourages Senate HELP Committee to Pursue Patient-Centered Approaches to Lower Health Care Costs, click here to read the letter.
2. PIPC Webinar: Value Assessments and Their Impact on Patients, click here to view the webinar.
3. The PCORI Blog: Spotlighting Rare Disease Research, click here to read the article.
4. Patient EngagementHIT: Patient Engagement Strategies for Improving Patient Activation, click here to read the article.
5. NYT: Doctors and Racial Bias: Still a Long Way to Go, click here to read the article.
6. PIPC Submits Comment Letter to ICER on International Collaborative to Develop New Methods to Guide Value-Based Pricing of Potential Cures, click here to read the letter.
7. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences, see details below.
8. PCORI Advisory Panel Openings, see details below.
9. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus, click here to submit your events.
10. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? Click here to view.
11. ICER Studies: Cardiovascular Disease, SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy, click here to provide patient input.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.
PIPC Chairman Tony Coehlo sent a letter to Senate Committee on Health, Education, Labor, and Pensions (HELP) Chairman Lamar Alexander (R-TN) urging patient-centered approaches to bringing down costs in the healthcare system. "Health care stakeholders – ranging from patients, providers, and innovators – understand that a value-based health care system that truly supports advancements in personalized and individualized medicine must be built on a foundation of patient-centeredness. Patient-centered, evidence-based health care can lower overall spending by ensuring patients are able to receive timely treatment that is right for them, avoiding downstream costs, and improving patient outcomes. We look forward to engaging with the Committee as you seek approaches to reduce health care spending and improve patient outcomes in the U.S," he wrote. Click here to read the letter.
2. PIPC Webinar: Value Assessments and Their Impact on Patients
On February 26, the Partnership to Improve Patient Care (PIPC) brought together advocates representing people with disabilities, patients, seniors, individuals experiencing disparities in care, providers and others for a webinar to learn about value assessments, their potential for discrimination, and related public policy threats to beware of at both the federal and state level. Metrics for measuring the “cost effectiveness” or value of treatments often relies on the quality-adjusted-life-year (QALY), which inherently discriminate against people with disabilities and serious chronic conditions. This webinar arms advocates with the information they need to oppose discriminatory value assessments from being incorporated into public programs such as Medicare and Medicaid that ultimately are used to deny coverage and access to patients. Click here to view the webinar.
3. The PCORI Blog: Spotlighting Rare Disease Research
PCORI sat down with Advisory Panel on Rare Disease members Scott Berns, MD, MPH and Matt Cheung, PhD, RPh to discuss rare disease research and how PCORI research and funding can guide and improve it. "I think that outreach and raising awareness to other rare disease organizations, including advocacy organizations and family organizations, on a couple of fronts would be important. First, for dialog and collaboration, because these organizations want to learn from one another so they don’t have to reinvent the wheel with their programs or research approaches. People have great hope and I think we should raise awareness and provide ready access to opportunities through PCORI that other organizations might not even be aware of....Second, we can assist rare disease organizations with actually developing comparative effectiveness research proposals, which can seem daunting to some. We can give them a sense of opportunities that PCORI may provide to them, such as the systematic reviews that PCORI is doing, survey existing research and find out what gaps still exist, and then hopefully funding research to address them," said Dr. Berns. Click here to read the article.
4. Patient EngagementHIT: Patient Engagement Strategies for Improving Patient Activation
In an article for Patient EngagementHIT, "Clinical care is only one step along the path to helping a patient achieve her optimal state of health. While cutting-edge procedures and innovative therapeutics play a critical role in treating or managing diseases, they typically can’t produce the best possible outcomes on their own. Patients must be engaged and activated to participate in their own care in order for clinical services to be truly effective. Patient activation, a measure of an individual’s understanding, competence, and willingness to participate in care decisions and processes, is a key component of treatment.Patient activation is different from patient engagement, according to Judith Hibbard, PhD, MPH." Click here to read the article.
5. NYT: Doctors and Racial Bias: Still a Long Way to Go
In an article for The New York Times, Aaron Carroll writes that much needs to be done to address racial bias in medicine. "In its report, the Institute of Medicine recommended strengthening health plans so that minorities were not disproportionately denied access. It urged that more underrepresented minorities be trained as health care professionals, and that more resources be directed toward enforcing civil rights laws. In practice, it endorsed more evidence-based care across the board. It noted the importance of interpreters, community health workers, patient education programs and cross-cultural education for those who care for patients." Click here to read the article.
6. PIPC Submits Comment Letter to ICER on International Collaborative to Develop New Methods to Guide Value-Based Pricing of Potential Cures
In a letter to the Institute for Clinical and Economic Review (ICER), the Partnership to Improve Patient Care (PIPC) offered suggestions to ICER on the development of new methods to guide value-based pricing of potential cures. The letter encourages ICER to acknowledge the long-term health benefits and cost savings resulting from curative therapies, and work with foreign collaborators to develop more patient-centered methods for value assessment that do not impede access. "While there is no single alternative method that succeeds on all domains at present, we are encouraged that several other organizations and approaches are underway in developing value assessment models that better reflect principles of patient-centeredness," wrote PIPC Chairman Tony Coelho. "We applaud ICER for recognizing the need to improve affordability for patients, and hope you take this opportunity to learn from the ongoing efforts of others to develop patient-centered methods for value assessment that incorporate a range of evidence to determine coverage and care decisions, and reject a single, one-size-fits-all measure of value." Click here to read the letter
7. Review and Comment! IVI Releases New Value Assessment Platform for Non-Small Cell Lung Cancer Therapy Sequences
IVI recently released the initial version of its new Open-Source Value Platform (OSVP) model for non-small cell lung cancer. Specifically, the platform will be assessing the relative value of sequential treatments for epidermal growth factor receptor positive (EGFR+), non-squamous non-small cell lung cancer (NSCLC).
IVI, a nonprofit organization dedicated to advancing the science and improving the practice of value assessment in healthcare, has now developed two open-source platforms from which healthcare value assessment tools can be built and utilized. The entirety of IVI’s modeling package, including a dynamic and engaging user interface, can be found IVI’s website.
The public comment period will remain open until April 1, 2019 and IVI encourages stakeholder comment on their model. The feedback received during this public comment period will provide the basis for improving the model. IVI has engaged an external technical expert panel to synthesize comments and recommend prioritized modifications for inclusion in the second release of the IVI-NSCLC platform.
For more information contact IVI’s executive director, Jennifer Bright at [email protected].
8. PCORI Advisory Panel Openings
PCORI is now accepting nominations and applications for new members of four of its advisory panels: Health Delivery and Disparities Research, Patient Engagement, Clinical Trials, and Rare Disease. PCORI’s advisory panels provide important guidance on everything from refining and prioritizing research questions for potential funding, to offering feedback on the design of research studies, to engaging patients as partners throughout the research process. If you are interested in serving on a panel or would like to nominate a candidate, the deadline to submit applications and nominations is Friday, March 29. You can find details about each panel and the application process here: http://bit.ly/advisorypanels
9. Submit 2019 Fly-ins, Advocacy Days, and Conferences to Democratic Caucus
In the interest of amplified patient and stakeholder engagement, your organization may be interested that the House Majority Leader’s office is compiling a list of fly-ins, advocacy days, and conferences that will be taking place throughout the year. This information will be shared with all House Democratic offices and used for a variety of purposes including scheduling and messaging. Feel free to share any events you have planned. If we hear of similar efforts by the Minority Leader, we hope to share that as well. Please submit your events, here.
10. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage?
Other countries are often referenced as examples of how the use of QALYs or similar cost-based thresholds impact access to care.
- New Zealand: Breast cancer patients are not receiving access to to life-saving medications. As a result of widespread criticism, PHARMAC is set to review its practices of breast cancer drug funding. Click here to read more. Patients in New Zealand also face barriers to access for treatment of spinal muscular atrophy. Click here to read more.
- Canada: Discriminatory cost effectiveness measures are blocking access to care for patients with spinal muscular atrophy patients. Click here and here to read more. Click here to view the story of a child with thyroid cancer forced to come to the U.S. for care, and here for an article about high costs of Parkinson's and MS treatments.
- Netherlands: Cost effectiveness measures are blocking access to cystic fibrosis treatments for children. It also remains unavailable for adults because the government has failed to reach an agreement. Click here to read more.
- United Kingdom: English families are moving to Scotland and Ireland in an attempt to access MS drugs not covered by the NHS. Activists are fighting for access to treatments for cystic fibrosis and cancer. Click here, here, and here for articles related to cystic fibrosis. Click here and here to read about the fight for access to cancer drugs in Scotland. Click here for an article related to MS. Click here for more information on the NHS drug approval process.
11. ICER Studies: Cardiovascular Disease, SMA, Depression, MS, Duchenne Muscular Dystrophy, Peanut Allergy
The Institute for Clinical Economic Review (ICER) conducts cost effectiveness studies for insurers using the cost-per-QALY methodology. ICER provides guidance on its website for patients and patient advocates to provide direct input related to their experiences with the disease. Click here to provide patient input. Click here to view the topics and deadlines. Please note the following upcoming formal ICER deadlines per their website:
- Cardiovascular Disease : 9/26/2019 Meeting: Midwest CEPAC to deliberate and vote on ICER's report on evidence presented in ICER's report on additive CVD therapies.
- Spinal Muscular Atrophy: 3/7/2019 Meeting: New England CEPAC to deliberate and vote on ICER's report on treatments for SMA. Evidence Report now available.
- Depression: Draft Evidence Report: 3/21/2019. Meeting 5/23/2019: Midwest CEPAC to review evidence on esketamine as a therapy for treatment-resistant depression.
- Multiple Sclerosis: Draft Evidence Report: 3/14/2019. Meeting 5/23/2019: Midwest CEPAC to review ICER's assessment of siponimod (Novartis) for secondary progressive multiple sclerosis.
- Peanut Allergy: Draft Evidence Report: 4/9/2019. Meeting 6/11/2019: CTAF to review ICER's assessment of treatments for peanut allergy.
- Duchenne Muscular Dystrophy: Draft scoping document available. Meeting 7/25/2019: New England CEPAC to deliberate and vote on evidence presented in ICER's report on treatments for Duchenne muscular dystrophy.
- Unsupported Price Increase Assessment: 3/8/2019: Revised protocol.
12. Upcoming Events and Webinars
Health Affairs Briefing: Patients As Consumers
March 5, 2019
Click here for details.
PCORI Board of Governors Meeting
March 19, 2019
Click here for details.
NPC @ National Quality Forum Annual Conference
March 24-26, 2019
Click here for details.
NPC @ Health Datapalooza 2019
March 27-28, 2019
Click here for details.
Cycle 1 2019 Limited PCORI Funding Announcement: Partnerships To Conduct Research (PaCR) within PCORnet
April 3, 2019
Click here for details.
PCORI Board of Governors Meeting
April 16, 2019
Click here for details.
Cycle 2 2019 Improving Methods Applicant Town Hall
May 9, 2019
Click here for details.
Advisory Panel on Clinical Trials Spring 2019 Meeting
May 15, 2019
Click here for details.
Advisory Panel on Healthcare Delivery and Disparities Research Spring 2019 Meeting
May 16, 2019
Click here for details.
2019 NEC Symposium
June 2 - 5, 2019,
Click here for details.
A New Path Forward for Using Real World Evidence in Randomized Clinical Trials
June 23, 2019,
Click here for details.
13. Medical Journal Articles
How Patient's Access to Evidence-Based Medicine Provides Them with a New Hope "The 45 Min—An Insightful Round," click here to view.
Improving Patient-Reported Measures in Oncology, click here to view.
Moving Forward from Drug-Centred to Patient-Centred Research, click here to view.
Eliciting Patient-Important Outcomes Through Group Brainstorming: When Is Saturation Reached? Click here to view.
Patient-Community Perspectives on Real-World Evidence: Enhancing Engagement, Understanding, and Trust, click here to view.
A Narrative Review of Data Collection and Analysis Guidelines for Comparative Effectiveness Research in Chronic Pain Using Patient-Reported Outcomes and Electronic Health Records, click here to view.
A Patient-Centered Approach to Comparative Effectiveness Research Focused on Older Adults: Lessons From the Patient-Centered Outcomes Research Institute, click here to view.
Editorial: Evaluating Patient and Public Involvement in Research, click here to view.
14. AHRQ Effective Program Updates
Comment Period: High Utilizers of Health Care, click here to view.
Nonopioid Pharmacologic Treatments for Chronic Pain, click here to view.
Systematic Review Update: Noninvasive Nonpharmacologic Treatments for Chronic Pain, click here to view.
Treatment of Acute Pain: An Evidence Map, click here to view.
Development of Harmonized Outcome Measures for Use in Patient Registries and Clinical Practice: Methods and Lessons Learned, click here to view.
Standardized Library of Depression Outcome Measures, click here to view.
Patient Navigation Models for Lung Cancer, click here to view.
Stroke Prevention in Patients With Atrial Fibrillation: A Systematic Review Update, click here to view.
Long-term Drug Therapy and Drug Holidays for Osteoporosis Fracture Prevention: A Systematic Review, click here to view.