1. Join This Thursday For PIPC Forum 2018: Building Patient Standards — What do Patients Value? RSVP to [email protected].
2. PIPC: Don't Discriminate on Care, click here to view.
3. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for details.
4. CARE About Fibroids, White Dress Project to Partner on Uterine Fibroids Patient “Share Your Story” Campaign, click here to share your story.
5. NEJM: Complementary Approaches to Patient Engagement in Patient-Centered Outcomes Research, Click here to read the article.
6. Fierce Healthcare: Want to make patients better partners in their care? Physicians group offers 4 guiding principles, click here to read the article.
7. Blog: “High Value, Low Wastage Research” Is More Than Just a Catchphrase Now
8. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below.
The 8th Annual PIPC Forum will be held on December 6 from 12:30-2:30pm at the Reserve Officers Association located at 1 Constitution Avenue, NE, Washington, DC 20002. Please RSVP to [email protected] “Health care payers, policy-makers and providers are proposing and implementing new payment incentives and building value standards. In concept, the move to value can help patients by promoting access to affordable care that they value sustaining the system overall. In practice, many real-world examples of moving to value leave patients and people with disabilities behind. It is essential for patients and people with disabilities to be leading the way on new solutions. Please join us at the PIPC Annual Forum where we will focus on alternative, evidence-based strategies for making health care decisions that reflect our values.”
2. PIPC: Don't Discriminate on Care
Patients and people with disabilities face major threats as private insurers and government programs look to cut costs using quality-adjusted-life-years (QALYs) and other assessments that discriminate against patients, people with disabilities and seniors. Recently, new threats have emerged, including:
- A pharmacy benefit manager’s new plan to limit access to prescription drugs using a rigid cost-per-QALY threshold, similar to that used by the United Kingdom’s National Health Service;
- The use of cost-per-QALY thresholds in New York’s Medicaid program;
- A new Medicare proposal that would set reimbursement for physician-administered medicines based off of decisions made in countries that use WALYs and cost effectiveness thresholds to set national coverage.
Join us in opposing discriminatory denials of care across our health insurance system. Patients and people with disabilities deserve to have our lives valued, because nobody should be considered too expensive to get the care they need. Click here to learn more. Click here to view our petition.
3. 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. In Ireland, Multiple Sclerosis patients are pushing for increased access to treatment for MS. Click here to read more. In Canada, cystic fibrosis activists are petitioning their government for access to a new gene therapy drug. Click here to view the article. Spinal muscular atrophy advocates are similarly petitioning Health Canada to expand access to treatment. Click here to view the article. Similarly, in the United Kingdom, activists fight for access to treatments for cystic fibrosis and cancer. Click here and here for articles related to cystic fibrosis, and here for an article related to limited access to treatments for lung cancer. The Wall Street Journal’s Editorial Board recently opined on "why the U.S. shouldn’t put the world’s most innovative drug market at the mercy of what Greece is willing to pay for a cancer treatment.” Click here to view.
4. CARE About Fibroids, White Dress Project to Partner on Uterine Fibroids Patient “Share Your Story” Campaign
PIPC member CARE About Fibroids has announced a new patient story partnership with The White Dress Project. “First among their joint efforts, CARE About Fibroids and The White Dress Project will be actively co-promoting ‘Share Your Story,’ an online platform housed on The White Dress Project’s website that collects first-hand stories from women who are experiencing or who have experienced symptomatic uterine fibroids. The two groups also agreed to pursue future collaboration in the form of policy summits and in the recruitment and preparation of patients for participation in fibroid related policy discussion and regulatory processes. ‘We are thrilled to partner with The White Dress Project as we continue to fulfill our mission of heightening policymaker awareness and creating a greater sense of urgency around the toll and challenge of uterine fibroids,’ said Jenny Rosenberg, the Executive Director of CARE About Fibroids. ‘Combining the incredibly patient advocate network built by Tanika Gray Valbrun and the remarkable women of The White Dress Project, with the experience, scientific expertise, and policy know-how of CARE About Fibroids, we are catapulting our ability to bring uterine fibroids to the forefront of women’s health.’” Click here to share your story.
5. NEJM: Complementary Approaches to Patient Engagement in Patient-Centered Outcomes Research
In an article for The New England Journal of Medicine, Rebekah Angove, Joseph Boselovic, and Heather Sandoval discuss integration of patient-centered values into outcomes research. “...This integration of patient-centered outcomes research principles into patient-centered care is the first step to a unified framework to patient engagement. As the multidisciplinary field of patient engagement matures, it will be important to create a shared vocabulary and to standardize how professionals are trained in patient engagement through graduate and continuing medical education. Staying current on emerging theories and approaches to patient engagement will help to ensure that clinicians and researchers are not reinventing the wheel as they answer the charge of engaging patients across the health care spectrum.” Click here to read the article.
6. Fierce Healthcare: Want to make patients better partners in their care? Physicians group offers 4 guiding principles
In an article for Fierce Healthcare, Paige Minemyer covers new guidelines for patient engagement issued by the American College of Physicians. The principles outlined by the committee are: Treat patients and their families with respect and dignity; Include patients and families as active partners in care planning; Patients and families should play a role in reforming and improving delivery systems; and Bring the patient voice into medical training and education. López said the goal was to offer a ‘how to’ approach to a concept that providers are already trying to embrace. The first point, for example, is something that patients expect from their care experiences and can significantly impact satisfaction, according to the study. While being kind and considerate to patients and having open conversations with them about care planning may be expected pieces to provide patient-centered care, López said it’s important for providers to remember that they ‘learn best’ from patients, and that includes trainees in residency and established physicians. Click here to read the article.
7. Blog: “High Value, Low Wastage Research” Is More Than Just a Catchphrase Now
Hilda Bastian covers the “Ensuring Value In Research” symposium for PLOS Blogs. “It was hosted in Sydney by the National Health and Medical Research Council (NHMRC) and the Reward Alliance, (Disclosure: I was an invited speaker, supported by the NHMRC.) And the reason I came away feeling optimistic that all this waste talk isn’t itself a waste of time, was hearing the commitment and thought coming from the people involved in the Ensuring Value in Research Funders’ Collaboration and Development Forum (EViR). It’s co-led by the UK’s National Institute for Health Research (NIHR), the US Patient-Centered Outcomes Research Institute (PCORI), and the Netherland Organisation for Health Research and Development (ZonMW). EViR started when Matt Westmore from the NIHR invited a group of other funders to talk informally about responding to the research waste agenda. There were ‘few opportunities’, he said, for funders to get together, form a community, and share experiences and thinking. They modified the language to talking about increasing value as a positive take, to sidestep negativity many react to the ‘85% of research funding is wasted’ concept.” Click here to read the blog.
8. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression
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:
Hereditary Angiodema: Final report available.
Opioid Use Disorder: Final report on 12/3/18.
Asthma: 11/29/18 Midwest CEPAC meeting, register here.
Spinal Muscular Atrophy: Draft Evidence Report on 12/20/2018.
Depression: Revised scoping document available on treatment-resistant depression. Also note interventions of interest for 2019 review: Esketamine (Janssen)
Multiple Sclerosis: Revised scoping document available on treatment for secondary progressive multiple sclerosis.
Peanut Allergy: Stakeholder list available. Revised scoping document on 12/20/2018.
9. Upcoming Events and Webinars
Pre-rulemaking Overview: The 2018 Measures Under Consideration (MUC) List and How to Prepare for and Navigate the Process in 2019
December 5, 2018
Click here for details.
PCORI Board of Governors Meeting
December 11, 2018
Click here for details.
Advisory Panel on Rare Disease Winter 2018 Meeting
December 14, 2018
Click here for details.
Cycle 1 2019 Improving Methods Applicant Town Hall
January 16, 2019
Click here for details.
Cycle 1 2019 Treatment of Posttraumatic Stress Disorder in Adults Applicant Town Hall
January 17, 2019
Click here for details.
Cycle 1 2019 Treatment of Anxiety in Children, Adolescents, and/or Young Adults PFA Applicant Town Hall
January 22, 2019
Click here for details.
Pharmacological Treatment for Anxiety in Children, Adolescents, and/or Young Adults PFA Applicant Town Hall -- Cycle 1 2019
January 22, 2019
Click here for details.
Cycle 1 2019 Broad PFAs Applicant Town Hall
January 23, 2019
Click here for details
PCORI Board of Governors Meeting
January 29, 2019
Click here for details.
Patient Registries and Real-World Evidence Summit J
January 30-31, 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.
10. Medical Journal Articles
Cancer Patient Perspectives on the Use of Clinical Pathways and Shared Decision-Making in Cancer Care, click here to view.
In Proportion: Approaches for Displaying Patient-reported Outcome Research Study Results as Percentages Responding to Treatment, click here to view.
If Patients Are the True North, Patient-Centeredness Should Guide Research, click here to view.
Understanding and Improving Value Frameworks With Real-World Patient Outcomes, click here to view.
Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project, click here to view.
Comparative Effectiveness and Safety of Bariatric Procedures for Weight Loss: A PCORnet Cohort Study, click here to view.
Oh, the Places We'll Go: Patient-Reported Outcomes and Electronic Health Records, click here to view.
Putting Patients at the Centre of Healthcare: Progress and Challenges for Health Technology Assessments, click here to view.
Development and Pre-Testing of the Patient Engagement In Research Scale (PEIRS) to Assess the Quality of Engagement from a Patient Perspective, click here to view.
Researchers, Patients, and Stakeholders Evaluating Comparative-Effectiveness Research- A Mixed-Methods Study of the PCORI Reviewer Experience, click here to view.
Unique Review Criteria and Patient and Stakeholder Reviewers- Analysis of PCORI's Approach to Research Funding, click here to view.
Patient Centered Research to Improve Community Involvement (PaRTICIpate) in Diabetes Self-Management: A Conference Series for Developing Collaborations Between Researchers, Stakeholders, and Patients, click here to view.
11. AHRQ Effective Program Updates
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.
Addressing Social Isolation to Improve the Health of Older Adults: A Rapid Review, click here to view.
Labor Dystocia, click here to view.
Nonsurgical Treatments for Urinary Incontinence in Women: A Systematic Review Update, click here to view.
Randomized Trial of a Patient-Centered Decision Aid for Promoting Informed Decisions about Lung Cancer Screening: Implementation of a PCORI Study Protocol and Lessons Learned, click here to view.
Collaboration Is Key to Accelerating Diagnostics Access to Optimize Benefits of Precision Medicines, click here to view.
Telehealth for Acute and Chronic Care Consultations, click here to view.
Library of Patient-Centered Outcomes Research Resources, click here to view.