In this week's edition...
— Patients and People with Disabilities Urge Robust Engagement, Avoid Use of QALYs and Similar Measures in Drug Negotiation. See details below.
— Disability Organizations Support the Protecting Health Care for All Patients Act. See details below.
— PCORI Transcript for March 7, 2023 Meeting. See details below.
— Identifying Meaningful Health Equity Research: Racial Health Equity and Social Needs Review. Click here to read more.
— Lawmakers: Disability Leaders, Government Agencies Must Work Together to Expand Opportunities for People with Disabilities. Click here to read the article.
— Emerging Threats in States for Use of Discriminatory Metrics. See details below.
— What Happens in Countries Using QALYs and Cost-Based Thresholds? See details below.
— ICER's QALY-Based Study Topics. See details below.
— Upcoming Events and Webinars. See details below.
— AHRQ Effective Program Updates. See details below.
— Job Openings. See details below.
— Patients and People with Disabilities Urge Robust Engagement, Avoid Use of QALYs and Similar Measures in Drug Negotiation. See details below.
— Disability Organizations Support the Protecting Health Care for All Patients Act. See details below.
— PCORI Transcript for March 7, 2023 Meeting. See details below.
— Identifying Meaningful Health Equity Research: Racial Health Equity and Social Needs Review. Click here to read more.
— Lawmakers: Disability Leaders, Government Agencies Must Work Together to Expand Opportunities for People with Disabilities. Click here to read the article.
— Emerging Threats in States for Use of Discriminatory Metrics. See details below.
— What Happens in Countries Using QALYs and Cost-Based Thresholds? See details below.
— ICER's QALY-Based Study Topics. See details below.
— Upcoming Events and Webinars. See details below.
— AHRQ Effective Program Updates. See details below.
— Job Openings. See details below.
What We're Reading
1. Patients and People with Disabilities Urge Robust Engagement, Avoid Use of QALYs and Similar Measures in Drug Negotiation. On April 14, 2023, 56 organizations representing patients and people with disabilities sent a letter to CMS related to its guidance for implementation of the Medicare Drug Negotiation Program. The letter to CMS provides the following recommendations and comments:
The letter states, "For CMS to meet its obligations to beneficiaries, it will be critically important for CMS to be thoughtful in how it assesses therapeutic benefit to affected patients. CMS must ensure that patients and people with disabilities are granted a seat at the table and a clear and robust path to engagement throughout the process."
2. Disability Organizations Support the Protecting Health Care for All Patients Act. H.R. 485, the Protecting Health Care for All Patients Act, was the subject of a hearing on February 1, 2023, where Kandi Pickard, President of the National Down Syndrome Society, testified in support of the bill, stating, "This bill is critical to preventing discrimination against individuals with disabilities and chronic conditions by prohibiting QALYs and similar metrics that fail to account for people who do not fit arbitrarily determined standards of health.” Over 60 organizations sent a letter supporting the bill that extends existing law barring QALYs in Medicare to other federal programs. The bill was passed out of the Energy and Commerce Committee on March 24, 2023, with support from the committee members in the Majority, while Subcommittee Ranking Member Eshoo abstained from the vote and voted “present.” Subcommittee Ranking Member Eshoo discussed how long and how hard the disability community had worked to extend the ban on QALYs to other programs and her hope for the legislation to achieve bipartisanship. She and Chair McMorris-Rodgers agreed in a colloquy to work together toward bipartisanship as the bill moves to the House floor. PIPC Chairman Tony Coelho issued the following statement on H.R. 485, the Protecting Health Care for All Patients Act."
"I applaud the House Energy and Commerce Committee for continuing to work on this legislation that is drafted to carefully maintain existing legal protections for people with disabilities against use of discriminatory measures in Medicare, while extending those same protections to other programs within the committee’s jurisdiction.”
Click here to view the full statement of PIPC Chairman Tony Coelho. Click here to view Kandi Pickard’s testimony.
3. PCORI Transcript for March 7, 2023 Meeting. At its most recent Board meeting, PCORI’s Board of Governors discussed its Methodology Committee appointments, strategies to leverage PCORnet and its topics and portfolios for funding. Dr. Nakela Cook, PCORI’s Executive Director, highlighted that PCORI is offering supplemental funding to increase diversity and/or health equity impact in PCORI-funded CER, as well as to improve the understanding of patient-centered economic outcomes. The goal is to increase the diversity and representativeness of study populations in our PCORI-funded studies, and part of PCORI's efforts to make progress toward achieving health equity. PCORI’s Nominating Committee recommended a slate of 15 individuals for the Methodology Committee that is comprised of seven current Methodology Committee members recommended for approximately a two-year term, and eight new Methodology Committee members for an appointment of approximately a four-year term. New members nominated and approved were Suzanne Bakken, RN, PhD, Cathy Bradley, PhD, MPA, Matthew Fox, DSc, MPH, Jeremy Goldhaber-Fiebert, PhD, Larry Hearld, PhD, MSA, MBA, Lehana Thabane, MSc, PhD, Shirley Wang, PhD, ScM, and Susan Zickmund, PhD. Click here to view the transcript. Click here to access the Board materials.
4. Identifying Meaningful Health Equity Research: Racial Health Equity and Social Needs Review. A blog post overviews findings from a PCORI commissioned rapid review of an evidence map of social needs interventions, such as employment and child care assistance, to improve health outcomes. Over 25 years of research on social needs interventions, from 1995 through 2021, was examined to determine whether social drivers of racial health inequity were identified and evaluated. "Multiple historic and structural factors must be addressed to achieve health equity. Unfortunately, most studies included in this review did not meaningfully consider systemic barriers to health." Click here to read more.
5. Lawmakers: Disability Leaders, Government Agencies Must Work Together to Expand Opportunities for People with Disabilities. During a recent panel discussion hosted by The Hill, lawmakers on both sides of the aisle emphasized the need for more cooperation between leaders and agencies to provide necessary opportunities for individuals with disabilities. "Rep. Debbie Dingell (D-Mich.), said she became a proponent for disability policy reform when she was caring for her late husband, former Rep. John Dingell (D-Mich.)...Rep. Mike Bost (R-Ill.), chairman of the Committee on Veterans Affairs, said that veterans, particularly those with physical or mental disabilities, often face difficulty in finding employment." Click here to read the article.
Emerging Threats in States for Use of Discriminatory Metrics
Several states are considering policies that would reference entities such as the Institute for Clinical and Economic Review (ICER), which calls the discriminatory quality-adjusted life year (QALY) the “gold standard” for value assessment, and others are considering policies to import QALY-based coverage and reimbursement decisions from other countries that restrict access to care. We encourage you to keep track of all state-based threats using this new website tracking state activities. Key issues are highlighted below.
Pennsylvania
The Pennsylvania legislature held an informational meeting on Prescription Drug Affordability Boards in the House Health Committee on April 12 at 10am. While new text has not been released, a version of legislation creating a Board was introduced in 2021, HB 1722. In the prior Congress, the legislation did not bar the use of quality-adjusted life years (QALYs) in making determinations of the treatments subject to a cost review and upper payment limit. The bill explicitly allowed for consideration of "the estimated value or cost-effectiveness of the prescription drug product” without any restriction on use of discriminatory measures of cost effectiveness such as those using QALYs. Click here to learn more about Prescription Drug Affordability Boards and the implications of discriminatory measures of cost effectiveness. Click here to learn more about the committee chair, Rep. Dan Frankel.
Nevada
Nevada has introduced AB 250 which would set prices for prescription drugs in line with the new federally determined maximum fair price (MFP). The MFP price will be newly established through implementation of the IRA, and CMS has not yet released their final methodology to determine the MFP. It will be important that CMS avoid the use of QALYs and similar measures with implications for bias and discrimination and appropriately engage impacted populations in determining the outcomes for measuring a drug's therapeutic benefit. Advocates are urging CMS to use a transparent methodology that is centered on outcomes that matter to patients and people with disabilities and that explicitly does not rely on discriminatory QALYs and similar measures. Therefore, the pending legislation raises serious concerns about states directly referencing prices that may rely on biased or discriminatory measures. Click here to view testimony from Nevada Chronic Care Collaborative. Click here to view testimony from Epilepsy Foundation Nevada.
Minnesota
The Minnesota state legislature has introduced a bill to create a Prescription Drug Affordability Board, SF168 and HF17. It does not include a bar on using QALYs or other metrics that discriminate as a consideration for selecting the treatments to be considered, nor does the bill bar the use of QALYs as a consideration in establishing an upper payment limit, instead explicitly referencing prices established by third parties that may consider QALYs. The bill specifically references Canadian prices as a consideration for establishing the upper payment limit for drugs, prices which are explicitly based on QALYs. Click here to view the testimony from the ALS Association.
Massachusetts
An Act Advancing Health Care Research and Decision-Making Centered on Patients and People with disabilities, SD. 2117 and HD. 3356 has been introduced in both the House and Senate. This bill includes important patient protections including a ban on the discriminatory Quality-Adjusted Life Year (QALY).
California
California Attorney General Rob Bonta has solicited information from hospital CEOs across the state about how healthcare facilities and other providers are identifying and addressing racial and ethnic disparities in commercial decision-making tools. In response to this letter, advocates urged Attorney General Bonta to include QALYs and similar metrics in his investigation. Click here to view the Attorney General’s letter. Click here to view a response from advocates.
Oregon
The Oregon legislature held a hearing on March 27, 2023 on SB 492, legislation that would address the use of biased measures of quality of life, such as quality-adjusted life years or QALYs. PIPC Chairman Tony Coelho submitted testimony stating, "This legislation reflects decades of work to advance disability rights and to end the use of discriminatory measures of the effectiveness of health care that too often drive barriers to care for people with disabilities. In the past this may have been considered just a disability issue, but today we recognize the implications of these biased algorithms for health equity more broadly.” Click here to view testimony from PIPC Chairman Tony Coelho. Click here to view testimony submitted by the Caring Ambassadors Program. Click here to view the list of organizations in Oregon supporting the bill.
On October 6, 2022, the Oregon Health Evidence Review Commission (HERC) discussed a proposed plan for using QALYs, including proposals to redact the word QALY from the HERC’s deliberations without barring the use of the metric in making decisions. The meeting followed CMS approval of Oregon’s waiver application, which does not bar the use of QALYs in the interim. Click here to read comments submitted by PIPC along with 62 other groups asking CMS to reject the waiver. Click here to view the CMS-approved waiver. At the HERC meeting, the Oregon Health Authority expressed its intent to continue using a prioritized list, shifting it from use under a waiver to use as part of the State Plan Amendment after the waiver expires in 2027. The HERC decided to accept comments on their use of QALYs but has not made a decision as to whether they will adjust their methodology. Click here to view the letter from almost 50 advocacy groups asking the HERC to stop using QALYs. Click here to view testimony from PIPC Chairman Coelho to the Oregon HERC expressing his support for the Americans with Disabilities Act. Click here to view the options that continue to be under consideration by the HERC to continue using QALYs. Click here to view all of the comments shared with PIPC.
International News: What Happens in Countries Using QALYs and Cost-Based Thresholds?
Other countries are often referenced as examples of how the use of QALYs or similar cost-based thresholds impact access to care.
ICER's QALY-Based Study Topics
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.
Upcoming Events and Webinars
Connecting Real-World Data and Domain Expertise to Enhance Trial Design and Planning
May 18, 2023
Click here to view.
PCORnet Studies Applicant Workshop
May 18, 2023
Click here to view.
Medical Journal Articles
Patient Engagement in Research; Benefits, Challenges, Importance, and Implications. Click here to view.
The Opportunity for Greater Patient and Public Involvement and Engagement in Drug Development and Regulation. Click here to view.
Data Governance for Real-World Data Management: A Proposal for a Checklist to Support Decision Making. Click here to view.
A Patient-Centered Comparative Effectiveness Research Study of Culturally Appropriate Options for Diabetes Self-Management. Click here to view.
Payer–patient Engagement Framework to Strengthen Ethical Formulary Decision-making in Rare Disease Arena in the USA. Click here to view.
The Impact on Cost-Effectiveness of Accounting for Generic Drug Pricing: Four Case Studies. Click here to view.
A Perspective on Life-Cycle Health Technology Assessment and Real-World Evidence for Precision Oncology in Canada. Click here to view.
AHRQ Effective Program Updates
Draft Report: Impact of Healthcare Algorithms on Racial and Ethnic Disparities in Health and Healthcare. Click here to view.
Systematic Review: Partian Breast Irradiation for Breast Cancer. Click here to view.
Systematic Review: Use of Telehealth During the COVID-19 Era. Click here to view.
Research Report: Analysis of Requirements for Coverage with Evidence Development (CED) - Topic Refinement. Click here to view.
Technical Brief: Infection Prevention and Control for the Emergency Medical Services and 911 Workforce. Click here to view.
Systematic Review: Management of Infantile Epilepsies. Click here to view.
Systematic Review: Pharmacologic and Nonpharmacologic Treatments for Posttraumatic Stress Disorder. Click here to view.
Systematic Review: Living Systematic Review on Cannabis and Other Plant-Based Treatments for Chronic Pain. Click here to view.
Job Openings
1. Patients and People with Disabilities Urge Robust Engagement, Avoid Use of QALYs and Similar Measures in Drug Negotiation. On April 14, 2023, 56 organizations representing patients and people with disabilities sent a letter to CMS related to its guidance for implementation of the Medicare Drug Negotiation Program. The letter to CMS provides the following recommendations and comments:
- We Urge Meaningful Engagement of Patients and People with Disabilities
- We urge CMS to Explicitly Recognize, Without Exception, the Existing Statute Barring Use of QALYs and Similar Measures
- Recommendations for Consideration of Non-QALY Evidence in Reports Using QALYs
- Recommendations for Consideration of Comparative Clinical Effectiveness Research and Appropriate Comparators
- Recommendations for Therapeutic Advance and Unmet Need
- We Urge CMS to Set a High Bar for the Quality of Evidence to be Considered.
The letter states, "For CMS to meet its obligations to beneficiaries, it will be critically important for CMS to be thoughtful in how it assesses therapeutic benefit to affected patients. CMS must ensure that patients and people with disabilities are granted a seat at the table and a clear and robust path to engagement throughout the process."
2. Disability Organizations Support the Protecting Health Care for All Patients Act. H.R. 485, the Protecting Health Care for All Patients Act, was the subject of a hearing on February 1, 2023, where Kandi Pickard, President of the National Down Syndrome Society, testified in support of the bill, stating, "This bill is critical to preventing discrimination against individuals with disabilities and chronic conditions by prohibiting QALYs and similar metrics that fail to account for people who do not fit arbitrarily determined standards of health.” Over 60 organizations sent a letter supporting the bill that extends existing law barring QALYs in Medicare to other federal programs. The bill was passed out of the Energy and Commerce Committee on March 24, 2023, with support from the committee members in the Majority, while Subcommittee Ranking Member Eshoo abstained from the vote and voted “present.” Subcommittee Ranking Member Eshoo discussed how long and how hard the disability community had worked to extend the ban on QALYs to other programs and her hope for the legislation to achieve bipartisanship. She and Chair McMorris-Rodgers agreed in a colloquy to work together toward bipartisanship as the bill moves to the House floor. PIPC Chairman Tony Coelho issued the following statement on H.R. 485, the Protecting Health Care for All Patients Act."
"I applaud the House Energy and Commerce Committee for continuing to work on this legislation that is drafted to carefully maintain existing legal protections for people with disabilities against use of discriminatory measures in Medicare, while extending those same protections to other programs within the committee’s jurisdiction.”
Click here to view the full statement of PIPC Chairman Tony Coelho. Click here to view Kandi Pickard’s testimony.
3. PCORI Transcript for March 7, 2023 Meeting. At its most recent Board meeting, PCORI’s Board of Governors discussed its Methodology Committee appointments, strategies to leverage PCORnet and its topics and portfolios for funding. Dr. Nakela Cook, PCORI’s Executive Director, highlighted that PCORI is offering supplemental funding to increase diversity and/or health equity impact in PCORI-funded CER, as well as to improve the understanding of patient-centered economic outcomes. The goal is to increase the diversity and representativeness of study populations in our PCORI-funded studies, and part of PCORI's efforts to make progress toward achieving health equity. PCORI’s Nominating Committee recommended a slate of 15 individuals for the Methodology Committee that is comprised of seven current Methodology Committee members recommended for approximately a two-year term, and eight new Methodology Committee members for an appointment of approximately a four-year term. New members nominated and approved were Suzanne Bakken, RN, PhD, Cathy Bradley, PhD, MPA, Matthew Fox, DSc, MPH, Jeremy Goldhaber-Fiebert, PhD, Larry Hearld, PhD, MSA, MBA, Lehana Thabane, MSc, PhD, Shirley Wang, PhD, ScM, and Susan Zickmund, PhD. Click here to view the transcript. Click here to access the Board materials.
4. Identifying Meaningful Health Equity Research: Racial Health Equity and Social Needs Review. A blog post overviews findings from a PCORI commissioned rapid review of an evidence map of social needs interventions, such as employment and child care assistance, to improve health outcomes. Over 25 years of research on social needs interventions, from 1995 through 2021, was examined to determine whether social drivers of racial health inequity were identified and evaluated. "Multiple historic and structural factors must be addressed to achieve health equity. Unfortunately, most studies included in this review did not meaningfully consider systemic barriers to health." Click here to read more.
5. Lawmakers: Disability Leaders, Government Agencies Must Work Together to Expand Opportunities for People with Disabilities. During a recent panel discussion hosted by The Hill, lawmakers on both sides of the aisle emphasized the need for more cooperation between leaders and agencies to provide necessary opportunities for individuals with disabilities. "Rep. Debbie Dingell (D-Mich.), said she became a proponent for disability policy reform when she was caring for her late husband, former Rep. John Dingell (D-Mich.)...Rep. Mike Bost (R-Ill.), chairman of the Committee on Veterans Affairs, said that veterans, particularly those with physical or mental disabilities, often face difficulty in finding employment." Click here to read the article.
Emerging Threats in States for Use of Discriminatory Metrics
Several states are considering policies that would reference entities such as the Institute for Clinical and Economic Review (ICER), which calls the discriminatory quality-adjusted life year (QALY) the “gold standard” for value assessment, and others are considering policies to import QALY-based coverage and reimbursement decisions from other countries that restrict access to care. We encourage you to keep track of all state-based threats using this new website tracking state activities. Key issues are highlighted below.
- Click here to learn more about the potential for Prescription Drug Affordability Boards to discriminate by incorporating the use of QALYS.
- Click here to view the Value Our Health state template legislation that would protect people with disabilities and chronic conditions from the use of QALYs and similar metrics developed by third parties such as ICER in decisions related to reimbursement and coverage, as well as ensure their engagement in decision-making.
- Click here to view a one pager about the flaws in ICER’s methodology.
- Click here to view information from experts on the downside of referencing foreign countries.
- Click here to learn about statutory protections against use of QALYs.
Pennsylvania
The Pennsylvania legislature held an informational meeting on Prescription Drug Affordability Boards in the House Health Committee on April 12 at 10am. While new text has not been released, a version of legislation creating a Board was introduced in 2021, HB 1722. In the prior Congress, the legislation did not bar the use of quality-adjusted life years (QALYs) in making determinations of the treatments subject to a cost review and upper payment limit. The bill explicitly allowed for consideration of "the estimated value or cost-effectiveness of the prescription drug product” without any restriction on use of discriminatory measures of cost effectiveness such as those using QALYs. Click here to learn more about Prescription Drug Affordability Boards and the implications of discriminatory measures of cost effectiveness. Click here to learn more about the committee chair, Rep. Dan Frankel.
Nevada
Nevada has introduced AB 250 which would set prices for prescription drugs in line with the new federally determined maximum fair price (MFP). The MFP price will be newly established through implementation of the IRA, and CMS has not yet released their final methodology to determine the MFP. It will be important that CMS avoid the use of QALYs and similar measures with implications for bias and discrimination and appropriately engage impacted populations in determining the outcomes for measuring a drug's therapeutic benefit. Advocates are urging CMS to use a transparent methodology that is centered on outcomes that matter to patients and people with disabilities and that explicitly does not rely on discriminatory QALYs and similar measures. Therefore, the pending legislation raises serious concerns about states directly referencing prices that may rely on biased or discriminatory measures. Click here to view testimony from Nevada Chronic Care Collaborative. Click here to view testimony from Epilepsy Foundation Nevada.
Minnesota
The Minnesota state legislature has introduced a bill to create a Prescription Drug Affordability Board, SF168 and HF17. It does not include a bar on using QALYs or other metrics that discriminate as a consideration for selecting the treatments to be considered, nor does the bill bar the use of QALYs as a consideration in establishing an upper payment limit, instead explicitly referencing prices established by third parties that may consider QALYs. The bill specifically references Canadian prices as a consideration for establishing the upper payment limit for drugs, prices which are explicitly based on QALYs. Click here to view the testimony from the ALS Association.
Massachusetts
An Act Advancing Health Care Research and Decision-Making Centered on Patients and People with disabilities, SD. 2117 and HD. 3356 has been introduced in both the House and Senate. This bill includes important patient protections including a ban on the discriminatory Quality-Adjusted Life Year (QALY).
California
California Attorney General Rob Bonta has solicited information from hospital CEOs across the state about how healthcare facilities and other providers are identifying and addressing racial and ethnic disparities in commercial decision-making tools. In response to this letter, advocates urged Attorney General Bonta to include QALYs and similar metrics in his investigation. Click here to view the Attorney General’s letter. Click here to view a response from advocates.
Oregon
The Oregon legislature held a hearing on March 27, 2023 on SB 492, legislation that would address the use of biased measures of quality of life, such as quality-adjusted life years or QALYs. PIPC Chairman Tony Coelho submitted testimony stating, "This legislation reflects decades of work to advance disability rights and to end the use of discriminatory measures of the effectiveness of health care that too often drive barriers to care for people with disabilities. In the past this may have been considered just a disability issue, but today we recognize the implications of these biased algorithms for health equity more broadly.” Click here to view testimony from PIPC Chairman Tony Coelho. Click here to view testimony submitted by the Caring Ambassadors Program. Click here to view the list of organizations in Oregon supporting the bill.
On October 6, 2022, the Oregon Health Evidence Review Commission (HERC) discussed a proposed plan for using QALYs, including proposals to redact the word QALY from the HERC’s deliberations without barring the use of the metric in making decisions. The meeting followed CMS approval of Oregon’s waiver application, which does not bar the use of QALYs in the interim. Click here to read comments submitted by PIPC along with 62 other groups asking CMS to reject the waiver. Click here to view the CMS-approved waiver. At the HERC meeting, the Oregon Health Authority expressed its intent to continue using a prioritized list, shifting it from use under a waiver to use as part of the State Plan Amendment after the waiver expires in 2027. The HERC decided to accept comments on their use of QALYs but has not made a decision as to whether they will adjust their methodology. Click here to view the letter from almost 50 advocacy groups asking the HERC to stop using QALYs. Click here to view testimony from PIPC Chairman Coelho to the Oregon HERC expressing his support for the Americans with Disabilities Act. Click here to view the options that continue to be under consideration by the HERC to continue using QALYs. Click here to view all of the comments shared with PIPC.
International News: What Happens in Countries Using QALYs and Cost-Based Thresholds?
Other countries are often referenced as examples of how the use of QALYs or similar cost-based thresholds impact access to care.
- Australia: The government's intervention to make insulin more accessible "is not good enough" as more than 30,000 pare petitioning to keep Fiasp on the PBS.
ICER's QALY-Based Study Topics
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.
- Amyotrophic Lateral Sclerosis (ALS): Final Evidence Report and Meeting Summary available. Evidence Presentation available. Draft Evidence Report available. Public comments closed. Model Analysis Plan available. Research Protocol available. Revised Scoping Document available.
- Sickle Cell Disease: Research Protocol available. 02/27/2023: Model Analysis Plan. Revised Scoping Document available. Draft Scoping Document available. Public Comments closed.
- Non-Alcoholic Steatohepatitis: Draft Evidence Report available. Public comments closed. Model Analysis Plan available. Research Protocol available. Revised Scoping Document available. Draft Scoping Document available. Public comments closed.
- Alzheimer's Disease: Revised Evidence Report available. Public comments open until 2/2/2023. 3/1/2023: Evidence Report. Model Analysis Plan available. Research Protocol available. Revised Scoping Document available.
Upcoming Events and Webinars
Connecting Real-World Data and Domain Expertise to Enhance Trial Design and Planning
May 18, 2023
Click here to view.
PCORnet Studies Applicant Workshop
May 18, 2023
Click here to view.
Medical Journal Articles
Patient Engagement in Research; Benefits, Challenges, Importance, and Implications. Click here to view.
The Opportunity for Greater Patient and Public Involvement and Engagement in Drug Development and Regulation. Click here to view.
Data Governance for Real-World Data Management: A Proposal for a Checklist to Support Decision Making. Click here to view.
A Patient-Centered Comparative Effectiveness Research Study of Culturally Appropriate Options for Diabetes Self-Management. Click here to view.
Payer–patient Engagement Framework to Strengthen Ethical Formulary Decision-making in Rare Disease Arena in the USA. Click here to view.
The Impact on Cost-Effectiveness of Accounting for Generic Drug Pricing: Four Case Studies. Click here to view.
A Perspective on Life-Cycle Health Technology Assessment and Real-World Evidence for Precision Oncology in Canada. Click here to view.
AHRQ Effective Program Updates
Draft Report: Impact of Healthcare Algorithms on Racial and Ethnic Disparities in Health and Healthcare. Click here to view.
Systematic Review: Partian Breast Irradiation for Breast Cancer. Click here to view.
Systematic Review: Use of Telehealth During the COVID-19 Era. Click here to view.
Research Report: Analysis of Requirements for Coverage with Evidence Development (CED) - Topic Refinement. Click here to view.
Technical Brief: Infection Prevention and Control for the Emergency Medical Services and 911 Workforce. Click here to view.
Systematic Review: Management of Infantile Epilepsies. Click here to view.
Systematic Review: Pharmacologic and Nonpharmacologic Treatments for Posttraumatic Stress Disorder. Click here to view.
Systematic Review: Living Systematic Review on Cannabis and Other Plant-Based Treatments for Chronic Pain. Click here to view.
Job Openings
- Associate Director, Public Engagement, Patient-Centered Outcomes Research Institute. Details.
- Engagement Officer, Public and Patient Engagement, Patient-Centered Outcomes Research Institute. Details.
- Program Officer, Science of Engagement, Patient-Centered Outcomes Research Institute. Details.
