In This Week’s Issue:
1. PIPC: Don't Discriminate on Care, click here to view.
2. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for details.
3. MedPage Today: Why do Patients Withhold Information? Click here to read the article.
4. Patient EngagementHIT: Low Patient Portal Use Sparks Calls for Patient Tech Education, click here to read the article.
5. CARE About Fibroids, White Dress Project to Partner on Uterine Fibroids Patient “Share Your Story” Campaign, click here to share your story.
6. PCORI Blog: Engaging Parents to Help Reduce Medical Errors in the Hospital, click here to read the blog.
7. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. PIPC: Don't Discriminate on Care, click here to view.
2. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for details.
3. MedPage Today: Why do Patients Withhold Information? Click here to read the article.
4. Patient EngagementHIT: Low Patient Portal Use Sparks Calls for Patient Tech Education, click here to read the article.
5. CARE About Fibroids, White Dress Project to Partner on Uterine Fibroids Patient “Share Your Story” Campaign, click here to share your story.
6. PCORI Blog: Engaging Parents to Help Reduce Medical Errors in the Hospital, click here to read the blog.
7. Upcoming ICER Studies: Angiodema, Asthma, Opioid Use Disorder, MS, Peanut Allergy, SMA, Depression, click here to provide patient input.
8. Upcoming Events and Webinars, see details below.
9. Medical Journal Articles, see details below.
10. AHRQ Effective Program Updates, see details below.
1. 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:
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.
2. 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 New Zealand, patients are not getting access to treatment, and some are forced to leave the country to access treatments. Click here, here and here to read more. In Canada, click here to view the story of a child with thyroid cancer forced to come to the U.S. for care, and here to learn about patients seeking medications for heart pain being denied access. 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.
3. MedPage Today: Why do Patients Withhold Information?
In an article for MedPage Today, Elizabeth Hlavinka reports that patients are withholding information due to embarrassment, fear of being judged by clinicians. “Eduardo Bruera, MD, of the University of Texas MD Anderson Cancer Center in Houston, noted that this study did not differentiate between failing to disclose information and deliberately lying to physicians. He emphasized that many patients may choose not to disclose their lifestyle habits or lack of understanding, but when a patient is untruthful after a physician inquires about a certain point in their history, it may put the patient's health in greater danger.” Click here to read the article.
4. Patient EngagementHIT: Low Patient Portal Use Sparks Calls for Patient Tech Education
In an article for Patient EngagementHIT, Sara Heath writes that nearly 63 percent of patients aren’t using patient portals — suggesting that strategies to educate patients should be improved. “However, other patterns did emerge, Anthony and colleagues reported. For example, Medicare and Medicaid enrollees were more likely to say that they didn’t use the portal because they wanted to speak directly with their providers. Patients over age 40 and some in ethnic minorities were more likely to say they had security concerns about the patient portal than younger, white patients. Hispanic patients and those over age 50 were more likely to say that they did not have a need to use the patient portal. These trends suggest that access to technology, internet, and other infrastructure are not the most pressing barriers to patient portal use. Instead, patient understanding of and comfort with the tool keep patients from accessing the portal, according to Anthony.” Click here to read the article.
5. 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.
6. PCORI Blog: Engaging Parents to Help Reduce Medical Errors in the Hospital
A new post in The PCORI Blog discusses efforts to engage patients and their families to avoid medical errors in the hospital. “...Past research has focused on how staff communicate with each other, but few studies have focused on how staff communicate with patients and families. So, a PCORI-funded research team, led by Christopher Landrigan, MD, MPH, of Boston Children's Hospital, worked to implement a program created with parents and other stakeholders to help doctors and nurses communicate with families in the pediatrics department during hospital rounds—daily meetings when a care team reviews patients' progress and plan for the day.” Click here to read the blog.
7. 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 available.
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.
8. Upcoming Events and Webinars
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.
9. Medical Journal Articles
Editorial: Evaluating Patient and Public Involvement in Research, click here to view.
Developing a Patient-Centered Outcome for Targeting Early Childhood Obesity Across Multiple Stakeholders, click here to view.
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.
10. 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.
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.
2. 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 New Zealand, patients are not getting access to treatment, and some are forced to leave the country to access treatments. Click here, here and here to read more. In Canada, click here to view the story of a child with thyroid cancer forced to come to the U.S. for care, and here to learn about patients seeking medications for heart pain being denied access. 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.
3. MedPage Today: Why do Patients Withhold Information?
In an article for MedPage Today, Elizabeth Hlavinka reports that patients are withholding information due to embarrassment, fear of being judged by clinicians. “Eduardo Bruera, MD, of the University of Texas MD Anderson Cancer Center in Houston, noted that this study did not differentiate between failing to disclose information and deliberately lying to physicians. He emphasized that many patients may choose not to disclose their lifestyle habits or lack of understanding, but when a patient is untruthful after a physician inquires about a certain point in their history, it may put the patient's health in greater danger.” Click here to read the article.
4. Patient EngagementHIT: Low Patient Portal Use Sparks Calls for Patient Tech Education
In an article for Patient EngagementHIT, Sara Heath writes that nearly 63 percent of patients aren’t using patient portals — suggesting that strategies to educate patients should be improved. “However, other patterns did emerge, Anthony and colleagues reported. For example, Medicare and Medicaid enrollees were more likely to say that they didn’t use the portal because they wanted to speak directly with their providers. Patients over age 40 and some in ethnic minorities were more likely to say they had security concerns about the patient portal than younger, white patients. Hispanic patients and those over age 50 were more likely to say that they did not have a need to use the patient portal. These trends suggest that access to technology, internet, and other infrastructure are not the most pressing barriers to patient portal use. Instead, patient understanding of and comfort with the tool keep patients from accessing the portal, according to Anthony.” Click here to read the article.
5. 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.
6. PCORI Blog: Engaging Parents to Help Reduce Medical Errors in the Hospital
A new post in The PCORI Blog discusses efforts to engage patients and their families to avoid medical errors in the hospital. “...Past research has focused on how staff communicate with each other, but few studies have focused on how staff communicate with patients and families. So, a PCORI-funded research team, led by Christopher Landrigan, MD, MPH, of Boston Children's Hospital, worked to implement a program created with parents and other stakeholders to help doctors and nurses communicate with families in the pediatrics department during hospital rounds—daily meetings when a care team reviews patients' progress and plan for the day.” Click here to read the blog.
7. 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 available.
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.
8. Upcoming Events and Webinars
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.
9. Medical Journal Articles
Editorial: Evaluating Patient and Public Involvement in Research, click here to view.
Developing a Patient-Centered Outcome for Targeting Early Childhood Obesity Across Multiple Stakeholders, click here to view.
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.
10. 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.
