Meeting Minutes, March 2023
Call to Order and Approval of November 17, 2022, Meeting Summary
AHRQ Director’s Highlights
Update on AHRQ’s Patient Safety Framework and the Patient Safety Action Alliance
Long COVID and Addressing Health System Fragmentation
NAC Member Group Reports and Discussion
Chair's Wrap-Up and Final Comments
NAC Members Present
Edmondo J. Robinson, M.D., M.B.A., M.S., Moffitt Cancer Center (NAC Chair)
Andrew D. Auerbach, M.D., M.P.H., University of California, San Francisco
Komal Bajaj, M.D., M.S.-H.P.Ed., Albert Einstein College of Medicine
Caroline Carney, M.D., M.Sc., Magellan Health
Neil I. Goldfarb, Greater Philadelphia Business Coalition on Health
Krista Hughes, B.C.P.A., Hughes Advocacy
Catherine H. Ivory, Ph.D., R.N., Vanderbilt University Medical Center
Mireille Jacobson, Ph.D., M.A., University of Southern California, Leonard Davis School of Gerontology
Kannan Ramar, M.D., F.A.A.S.M., F.C.C.P., Mayo Clinic
David F. Schmitz, M.D., F.A.A.F.P., University of North Dakota School of Medicine and Health Sciences
Henry H. Ting, M.D., M.B.A., Delta Air Lines, Inc.
Jiajie Zhang, Ph.D., The University of Texas Health Science Center at Houston
Ex Officio Members and Alternates Present
David Atkins, M.D., M.P.H., U.S. Department of Veterans Affairs
Shari M. Ling, M.D., Centers for Medicare and Medicaid Services
AHRQ Staff Members Present
Robert Otto Valdez, Ph.D., M.H.S.A., Director
David Meyers, M.D., Deputy Director
Erin Grace, M.H.A., Center for Quality Improvement and Patient Safety
Mamatha S. Pancholi, M.S., Senior Advisor to the Director
Jaime Zimmerman, M.P.H., P.M.P., Designated Management Official
Amy Rabin, NAC Coordinator
Mattie Smith, R.N., M.S.N., Long COVID Patient Advocate
Robin Weinick, Ph.D., Technical Report Writer
Edmondo J. Robinson, M.D., M.B.A., M.S. (NAC Chair)
Dr. Edmondo Robinson called the meeting to order. He asked all Agency for Healthcare Research and Quality’s (AHRQ’s) National Advisory Committee (NAC) attendees to introduce themselves. The NAC members voted unanimously to approve the November 17, 2022, NAC meeting minutes. Jaime Zimmerman, M.P.H., P.M.P., reviewed the day’s agenda and introduced AHRQ’s director, Robert Otto Valdez, Ph.D., M.H.S.A.
AHRQ Director’s Highlights
Robert Otto Valdez, Ph.D., M.H.S.A., Director, AHRQ
Dr. Valdez thanked the NAC members for their time and attention. He highlighted some of the agency’s achievements in 2022 and stated that AHRQ engages in a collaborative commitment to build an equitable, high-quality healthcare system. AHRQ focuses on healthcare improvement using social and behavioral sciences and pushes forward the dissemination and implementation of knowledge, especially knowledge about innovative therapies.
In 2022, AHRQ’s Office of Management Services awarded 423 grants, expending about $124 million as well as $19 million from the Patient-Centered Outcomes Research Trust Fund and about $5 million from the Patient-Centered Outcomes Research Institute (PCORI). The agency returned AHRQ employees to offices at Fishers Lane in Rockville, Maryland, while establishing a remote work policy.
The Office of Extramural Research, Education and Priority Populations awarded $3.8 million in new grants to support research training and career development for health services research scientists. It released a funding opportunity announcement for Learning Health System Embedded Scientist Training and Research Centers.
AHRQ’s Office of Communications reported that AHRQ.gov had 14.7 million page views in 2022. The AHRQ News Now weekly newsletter has 194,000 subscribers. The AHRQ Views Blogs have about 80,000 subscribers. AHRQ’s online presence has increased significantly on Instagram, Twitter, and on other online platforms. AHRQ has been working to create an equitable care delivery system. It recently convened a health equity summit to identify the strategies needed to advance equity within healthcare delivery. The issue cuts across all AHRQ activities and is being addressed in workgroups that consider policies, procedures, science, and innovation. The agency released a grant-supplement Notice of Funding Opportunity for increasing the diversity of health services researchers.
AHRQ’s Center for Financing, Access, and Cost Trends supported several new publications involving its Healthcare Cost and Utilization Project (HCUP) databases. HCUP released 16 statistical briefs and produced three updates to its Visualization on Inpatient Trends in COVID- 19. The Medical Expenditure Panel Survey program has been busy updating its data and improving its website. It produced statistical briefs and a chartbook on the insurance component. The center produced many policy-relevant publications, featuring issues such as access to healthcare, job flexibility/paid sick leave, and changes in preventive services considering race, ethnicity, and Medicare.
AHRQ’s Center for Quality Improvement and Patient Safety (CQuIPS) collaborated with other HHS agencies in a large November meeting on patient and workforce safety. The country and healthcare system experienced great stresses during the COVID period, and progress slowed considerably. The HHS Secretary has charged the agencies to co-create a national healthcare system action alliance to advance patient and workforce safety.
AHRQ released the 2022 National Healthcare Quality and Disparities Report. The report again states that much improvement is needed and that what we have been doing is not working. We need better strategies.
CQuIPS completed its program on Preventing Central Line-Associated Bloodstream Infections and Catheter-Associated Urinary Tract Infections in intensive care units. It posted an evidence-based toolkit on the AHRQ website. An analysis of findings from a final cohort was published in BMJ Open Quality. The center also completed a safety program for improving antibiotic use and published the results.
AHRQ’s Center for Evidence and Practice Improvement (CEPI) deepened the partnership with PCORI’s evidence synthesis group and received a commitment of $60 million to support AHRQ’s evidence-based practice center reports for the next three years.
Other recent projects have included the publication of the Guide to Integrate Patient-Generated Digital Health Data into Electronic Health Records in Ambulatory Care Settings and the publication of Reducing Healthcare Carbon Emissions: A Primer on Measures and Actions for Healthcare Organizations to Mitigate Climate Change.
CEPI has continued to support both the U.S. Preventive Services Task Force—publishing many new recommendations—and the Evidence-Based Practice Centers program. The latter celebrated a 25th anniversary in 2022. That means 25 years of supporting the move of evidence into clinical practice.
Update on AHRQ’s Patient Safety Framework and the Patient Safety Action Alliance
Erin Grace, M.H.A., Center for Quality Improvement and Patient Safety, AHRQ, and David Meyers, M.D., Director for Policy and Strategic Initiatives, AHRQ
Erin Grace noted that the Institute for Healthcare Improvement convened several organizations, including six Federal agencies, to form a National Steering Committee for Patient Safety, with a goal of creating a national action plan. The committee developed a “Safer Together” action plan, which includes a self-assessment tool and a resource implementation guide. In 2022, the committee urged healthcare leaders to recommit to patient safety. The committee’s national action plan is based on four foundational areas: patient/family engagement, culture/leadership/governance, workforce safety, and a learning health system.
Ms. Grace noted recent AHRQ activities in patient safety. These included two new requests for applications for research in diagnostic safety (10 grants) and three published toolkits in the healthcare-associated infections program. AHRQ released, in May 2022, a document on common formats for event reporting and diagnostic safety. It also released the 2022 National Patient Safety Database Dashboards and Chartbook.
Dr. David Meyers described the HHS Patient Safety Convening event, which was hosted by HHS Secretary Xavier Becerra in the fall of 2022. It featured leaders in healthcare delivery systems and included Dr. Valdez. The event emphasized the goal of creating healthcare systems that do zero harm. The discussions were designed to shape the form and content of a new Patient Safety Action Alliance. Another goal is to create a public-private partnership to move forward. AHRQ published a request for information and received about 100 responses. The Action Alliance also will build a broad learning community that can share solutions to barriers. It will address the four areas of the national action plan, which Ms. Grace noted. The Patient Safety Action Alliance is viewed as a public-private co-creation to advance patient safety at the healthcare delivery system level. It will feature multi-directional learning.
A planning committee representing AHRQ, the Centers for Disease Control and Prevention, the Centers for Medicare and Medicaid Systems, and the Food and Drug Administration will analyze the results of the request for information and then will attempt to engage healthcare executives. Webinars will be organized around foundational areas. Dr. Meyers asked the NAC members to consider the issues relating to patient safety and the Patient Safety Action Alliance. How does one operate a learning community? What skills and capabilities are needed? Should the NAC create a subcommittee (short-term) to advise on structure, process, and topics for the Action Alliance?
Komal Bajaj, M.D., agreed on the importance of patient and workforce safety. She hoped for a unique purpose for this new alliance. Neil I. Goldfarb suggested the need for a charter of expectations for group members, with their commitments. When asked about defining the membership, Dr. Goldfarb noted that his organization features a learning collaborative on building cultures of health. It features employer representatives who meet monthly then report findings to the full membership.
Catherine H. Ivory, Ph.D., R.N., called for a statement of goals and the definition of metrics to be used and information about how ideas will be evaluated and disseminated (she noted the work that has been done in perinatal safety). David F. Schmitz, M.D., emphasized that attention should be paid to the voices of the most vulnerable populations. Krista Hughes agreed, adding that all patient voices should be heard.
Dr. Robinson again raised the idea of creating a NAC subcommittee to address competencies, structure, and processes for the Patient Safety Action Alliance. Dr. Meyers noted that the SNAC would include not only NAC members—it could also include other experts and would be a temporary subcommittee. Dr. Bajaj welcomed the idea and wondered who would lead the alliance. Dr. Meyers responded that such issues would need to be addressed, in part by the SNAC itself.
Kannan Ramar, M.D., expressed support for creating the subcommittee and wondered what might be learned in doing so. Will the information that results be useful? Dr. Meyers responded that there are many people asking AHRQ to proceed, and that this likely would be a multi-year effort. Caroline Carney, M.D., M.Sc., expressed enthusiasm and suggested evaluating the comments that AHRQ has received. Other NAC members registered support for creating the SNAC. Dr. Bajaj suggested studying other groups/actions that have addressed the topic of learning. Dr. Robinson asked the NAC members to vote on a proposal to launch a subcommittee of the NAC to focus on the initial structure and topics for the Patient Safety Action Alliance.
The NAC members approved unanimously the creation of a subcommittee (SNAC) to focus on the initial structure and topics for the Patient Safety Action Alliance.
Long COVID and Addressing Health System Fragmentation
Mattie Smith, R.N., M.S.N., and Robin M. Weinick, Ph.D.
Dr. Robinson introduced a session on the condition known as “long COVID” and how its treatment relates to fragmentation in the healthcare system.
Mattie Smith and Dr. Robin Weinick reported on a recent summit on long COVID that was convened by AHRQ and Senator Tim Kaine. One purpose was to further AHRQ’s efforts to support clinicians and healthcare systems in providing patient-centered, coordinated care for long COVID patients. The summit featured panel discussions on the following:
- The debilitating impact of long COVID (the “brain fog”).
- The challenges in getting needed care and support (month-long waits).
- The issue of not being trusted or believed by clinicians.
- The reliance on a “clinician hero” to achieve proper care.
Ms. Smith related her experience with COVID and its aftermath. She was initially diagnosed with a heart condition, a diagnosis that was found to be incorrect. She was eventually diagnosed with COVID. Her symptoms persisted. After about nine months of suffering with COVID she visited an emergency room, seeking relief. The attending physician seemed to not take her seriously and offered a nebulizer albuterol treatment and steroid tablets. The emergency room bill was about $600. Eventually, she was diagnosed as a long-term COVID patient. Her fatigue continued, causing depression. Obtaining an appointment with an endocrinologist was difficult. In time, a doctor determined that she had an autoimmune thyroid disease, and treatment of her thyroid symptoms was helpful. The consideration of an additional physician was important. Ms. Smith emphasized that there are barriers to traveling to a doctor’s office, and there is a lack of specialty providers, especially in rural areas.
Dr. Robin Weinick referred directly to the recent summit, which served to support clinicians and health systems in providing and coordinating care for long COVID patients and to inform the Senate on the issues involved. After the panel presentations, participants joined breakout groups to identify opportunities for action. These included the following:
- Convene specialty societies, with their definitions and vocabularies.
- Consolidate sources of clinician information (treatment, resources).
- Identify and clarify care pathways.
- Ensure connections between primary care and specialists.
The conversation identified three opportunities for research:
- Learning from existing care models.
- Identifying payment models.
- Identifying strategies for shifting clinician beliefs.
The group recognized additional issues, including challenges in the disability application process and challenges in the development, socialization, and schooling of children.
Dr. Robinson asked the NAC members to consider Ms. Smith’s story and to add to it if possible.
Dr. Carney stated that Ms. Smith’s story reminded her of similar stories about patients in the healthcare system. Navigating the system and obtaining a diagnosis can be a lengthy and difficult process because of the fragmentation. Krista Hughes, B.C.P.A, added that this results in a lack of trust.
Dr. Schmitz cited the need to bring services as close to home as possible. Strategies such as the patient-centered medical home are needed. We also need better collaboration. How can we strengthen the backbone of primary care? Dr. Robinson stressed the need to benefit from lessons learned.
Mr. Goldfarb asked Ms. Smith how her views have changed because of her long COVID experience. Ms. Smith responded that she switched providers several times during the experience and learned what it is like to be a frustrated patient. The experience increased her empathy for other patients.
NAC Member Group Reports and Discussion
The NAC members amplified some topics from the smaller breakout groups. Ms. Hughes reported that some NAC members discussed the opportunity to leverage what is learned from long COVID to address other chronic conditions. The group discussed barriers and how financial support might be applied. Ms. Hughes also raised the idea of empathy, noting that healthcare workers are not necessarily taught about it.
Dr. Robinson asked the NAC members to consider themes and ideas that they wish to deliver to AHRQ staff, such as a research agenda, tools, optimized practices, and opportunities. He asked them to consider similarities between long COVID care and cancer care. Are the care pathways similar?
Dr. Carney referenced a company (Psych Hub) that distributes evidence-based mental health information, including YouTube videos. She suggested the possibility of forming unique partnerships with such organizations, like making referrals to providers.
Jiajie Zhang, Ph.D., noted two problems within the story of long COVID—lack of access to care and lack of a diagnosis. Both problems can be addressed using technology (telemedicine, AI, etc.).
Dr. Schmitz focused on telemedicine, considering its payment mechanisms and how they influence the delivery of care. He said that today we have medication-assisted therapy for opioid use disorder and that recent studies of opioid use treatment in rural and underserved areas include collaborative models and telehealth. Perhaps we need a decentralization of excellence that includes reaching out to local access partners and improving access for patients. New payment models could help.
Dr. Ivory raised the idea of developing better care models and care teams and establishing how they contribute to outcomes. Reimbursement is a key aspect, and care teams extend beyond the clinic to social services.
Mr. Goldfarb called for a study of how the problems of long COVID (for example) affect some groups, or sectors, of the population disproportionately.
Andrew D. Auerbach, M.D., emphasized that COVID is a new disease, and that treatment is being developed. AHRQ could play a role in addressing the need for rapid discovery by examining data and access. The learning health system model is promising.
Dr. Robinson noted the wide variety of systems and circumstances involved in long COVID care, even within individual States. Henry H. Ting, M.D., agreed on the importance of addressing the linkages between primary care and specialty care. He noted that we are not certain that long COVID is a new disease and that it has the hallmarks of many chronic conditions that require a multidisciplinary approach. Dr. Ting stated that no group has taken ownership of the long COVID phenomenon, which presents an opportunity to bring together a multidisciplinary team.
Dr. Ivory suggested that they first must develop a definition of what long COVID is, including its symptoms. Dr. Schmitz called for an analysis of studies that includes a focus on quality. Fragmentation makes it difficult to apply and follow the capitation model. What value does healthcare brings to society in this case? Dr. Robinson responded that there will be value in this work, citing the case of Ms. Smith, a nurse whose career was sidetracked as she tried to address the condition. He also noted that we should attempt to understand the opportunity costs of not investing in this work.
Dr. Bajaj wondered whether there might be particular subsets/groups with the condition that could be initial targets and suggested starting small and learning along the way. Dr. Weinick stressed that everything we learn about long COVID should be leveraged for other conditions and that alternative payment models have been employed elsewhere. Ms. Smith stated that there is an opportunity here to improve the situation.
Michael Sieverts, of Arlington, Virginia, briefly described his experience with long COVID, noting that thyroid therapy helped but has not made a large difference. He suggested that long COVID is not new and agreed with others that this is a recent manifestation of a condition that we have seen many times before with other viruses, notably chronic fatigue syndrome. Mr. Sieverts has taken part in National Institutes of Health studies and learned that standard blood tests do not tell us much. Spinal fluid analysis and immune cell markers offer more helpful information. He stated that it is important to understand what patients experience.
Dr. Robinson asked the NAC members for final comments and take-aways.
Dr. Ramar urged clinicians and researchers to listen to the patient and to step back to look at the broader picture. Also, the Action Alliance should avoid duplicating what other organizations are already doing.
Dr. Zhang urged AHRQ to focus on the dissemination and implementation of research findings (translation, including measurement) and on obtaining more funding for greater impact.
Mr. Goldfarb recommended addressing underlying problems such as fragmentation in the healthcare system rather than focusing only on long COVID. Address training, communication, primary care, accountability, and payment models.
Dr. Ivory encouraged a strong focus on care models, including reimbursement.
Dr. Schmitz stated the importance of hearing from marginalized populations and communities. The failure of healthcare in rural settings is clear, even though it is possible to provide exceptional care in rural areas.
Dr. Auerbach urged AHRQ to study how to innovate and deploy a learning health model. Dr. Ting called for more innovation to solve the complex problems that are involved. Start small and learn how to create a test for long COVID. We need to make connections among all the different areas of healthcare and all the players. We also need to make use of public/private partnerships and multiple Federal agencies.
Dr. Bajaj encouraged addressing complex systems together with a clear purpose; start with safety and then go beyond. Think big.
Ms. Hughes agreed with the focus on safety and welcomed the new SNAC idea. She spoke again about the importance of patients’ voices and the benefits of visualizing models and solutions.
Dr. Robinson pointed to the idea that patients’ conditions are entwined in systemic problems and that long COVID is one of those conditions. He emphasized that we must balance our focus on long COVID symptoms and the systemic challenges. The AHRQ team can embrace such a task and determine how to influence the various components that make up these challenges—in part by considering cross-agency fertilization opportunities. Dr. Schmitz suggested beginning by envisioning better quality care at a lower cost.
Dr. Robinson thanked the NAC members, the presenters, Director Valdez, and AHRQ staff and noted that the next NAC meeting will take place on July 12, 2023 (in person for NAC members). He adjourned the meeting at 2:46 p.m. (Eastern Time).
Edmondo J. Robinson, M.D., M.B.A., M.S., Chair
National Advisory Council
Agency for Healthcare Research and Quality