Meeting Minutes (Draft), November 2023
Contents
Summary
Call to Order and Approval of July 12, 2023, Meeting Summary
AHRQ Director’s Highlights
Consumer Experience Measurement: CAHPS Discussion
Update on the Subcommittee of the National Advisory Council (SNAC) for National Action Alliance to Advance Patient Safety
Update on the Subcommittee (SNAC) for AHRQ’s Patient-Centered Outcomes Research Trust Fund Investment
Public Comment
Chair's Wrap-Up and Final Comments
Summary
National Advisory Council (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
Lemrey “Al” Carter, PharmD, MS, National Association of Boards of Pharmacy
Joan L. Gelrud, RN, MSN, FACHE
Neil I. Goldfarb, Greater Philadelphia Business Coalition on Health
Sinsi Hernández-Cancio, JD, National Partnership for Women and Families
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
Elizabeth Mort, MD, MPH, Harvard Medical School, Massachusetts General Hospital
Kannan Ramar, M.D., F.A.A.S.M., F.C.C.P., Mayo Clinic
Jeana Reyes, M.S.N., R.N., Horizon Blue Cross Blue Shield of New Jersey
David F. Schmitz, M.D., F.A.A.F.P., University of North Dakota School of Medicine and Health Sciences
Joedrecka S. Brown Speights, MD, Florida State University
Jiajie Zhang, Ph.D., The University of Texas Health Science Center at Houston
Ex Officio and Alternates Present
Michael Bell, MD, Centers for Disease Control and Prevention
Thomas C. Buchmueller, PhD, Office of the Assistant Secretary for Planning and Evaluation
Amy Maclay Kilbourne, PhD, MPH, U.S. Department of Veterans Affairs
Ronald M. Kline, MD, Centers for Medicare & Medicaid Services
Agency for Healthcare Research and Quality (AHRQ) Staff Members Present
Robert Otto Valdez, PhD, MHSA, Director
Jaime Zimmerman, MPH, PMP, Designated Management Official
Regina Smith, NAC Coordinator
Amy Rabin, NAC Coordinator
Call to Order and Approval of July 12, 2023, Meeting Summary
Edmondo J. Robinson, MD, MBA, MS (NAC Chair)
Dr. Edmondo Robinson called the meeting to order at 10:45 a.m. (Eastern Time), welcoming the NAC members, speakers, and other participants. He noted seven NAC members who would be rotating off the council after this meeting: Andrew D. Auerbach, MD, MPH, Caroline Carney, MD, MSc, Catherine Ivory, PhD, RN, Mireille Jacobson, PhD, MA, David F. Schmitz, MD, Joedrecka S. Brown Speights, MD, and Henry Ting, MD, MBA. He noted that there is a new ex officio member of the NAC, Thomas C. Buchmueller, PhD, representing the Office of the Assistant Secretary for Planning and Evaluation (ASPE).
The NAC members voted unanimously to approve the July 12, 2023, NAC meeting minutes. Dr. Robinson presented the day’s agenda.
AHRQ Director’s Highlights
Robert Otto Valdez, Ph.D., M.H.S.A., Director, AHRQ
Dr. Robert Valdez offered highlights of recent NAC work, as the agency has been especially addressing six domains of high quality in healthcare: patient-centered, timely, safe, efficient, effective, and featuring equity. Actions and themes for the agency include the following:
- Determining how to measure high-quality care in all settings.
- Recognizing and studying the increase in healthcare settings.
- Seeking to improve healthcare in all communities.
- Learning from the COVID pandemic’s response in multiple settings and efforts.
- Studying the patient’s healthcare experience.
- Developing tools for improving services.
Dr. Valdez outlined objectives and strategies for the current period of 2023–-2026. These include working to improve local healthcare systems performance by:
- Reducing healthcare fragmentation.
- Aligning financial incentives.
- Recognizing and reducing age issues and inequities in healthcare.
- Expanding access to high-quality, affordable healthcare.
- Strengthening healthcare system resilience in light of hazards.
Those activities will address issues such as the differing rules for healthcare operations in the multiple states, the need to develop practice standards and equal treatment (especially in maternal healthcare), the need to integrate behavioral healthcare, and the need to improve the customer experience. AHRQ is working with the National Academy of Medicine to re-examine the issues of unequal treatment. This involves a charge to consider ways to vanquish unequal treatment, not simply to reduce disparities. AHRQ has a strong focus on the activities of dissemination and implementation of research findings.
Sinsi Hernández-Cancio, JD, asked about a new interagency program to improve research on women’s health. Dr. Valdez responded that the White House recently announced the initiative and that AHRQ will be part of it and is already involved in such work. Regarding the integration of behavioral health in primary care, Dr. Caroline Carney proposed that, as funding is offered to communities, AHRQ could measure results.
Consumer Experience Measurement: CAHPS Discussion
Craig Umscheid, MD, MS, AHRQ, Caren Ginsberg, PhD, AHRQ, Ron D. Hays, PhD, UCLA Fielding School of Public Health, Susan Edgman-Levitan, PA, John D. Stoeckle, Center for Primary Care Innovation
Dr. Craig Umscheid introduced a session on the agency’s Consumer Assessment of Healthcare Providers and Systems (CAHPS) program, which focuses on the patients’ experiences with healthcare and features well-known surveys. He stressed the importance of measurement to improving healthcare and the importance of CAHPS to his own work. He cited three themes for this session: AHRQ’s role as a research-focus entity to develop meaningful rigorous surveys, the inclusion of patients in maintaining the surveys, and the collection of interests, concerns, and feedback.
Dr. Caren Ginsberg, director of the CAHPS program, reviewed some history. The program was launched in 1995, initially designed to provide consumers with quality information for choosing health plans. It has evolved over time and today engages the science of the patients’ experiences. The program features validated surveys, supplemental questions, quality improvement resources, voluntary databases, and research to advance science, measurement, and improvement.
The program seeks to measure many aspects of a patient’s experience, including access, communication, information, respect, shared decision-making, and care coordination. To collect patient input, it uses quantitative methods, qualitative methods, and patient partnerships. The surveys address experiences with various providers, facility-based care, condition-specific care, and health plans. The different ways of collecting patient experience data do not stand alone. The results can be used in quality improvement, public reporting, certification/recognition, value- based purchasing, and health services research.
AHRQ, the survey sponsors (e.g., CMS, DOD, VA, NCQA), and the survey vendors (who apply the surveys) all use the survey information for a variety of purposes. AHRQ funds the program through contracts and cooperative agreements. It solicits input about priorities from stakeholders. Applicant proposals can identify topics and methods for survey item development and revision, research, and other products. Current program activities (priorities) include the following:
- Development of new surveys and supplemental item sets.
- Updates to existing surveys.
- Survey methods research.
- Improving patient experience.
- Patient narrative analysis and reporting.
Dr. Ron Hays, an investigator within the CAHPS program, focused on the patient’s voice, which is considered to be essential for the state of the science for surveys and involve asking what is important to the patient and whether survey respondents understand the questions asked. Survey development and evaluation feature the following:
- Literature review.
- Input from patients.
- Stakeholder feedback.
- Technical expert panel.
- Rigorous translation.
- Field testing.
- Focus groups.
- Cognitive testing.
- Analyses to assess if surveys reliably and accurately assess differences between clinicians and care units.
Design principles address what is important to the patient and what has been experienced. Questions must be understood consistently by a range of consumers. They must be administered in a standardized manner. Development must incorporate input from a wide range of stakeholders. Survey questions should be updated to ensure that they reflect the current healthcare landscape. Dr. Hays gave an example of the developmental steps that were required for creating the Hospital CAHPS (HCAHPS) survey. The process took a number of years and was followed some years later by a process of revision.
The Program features voluntary databases for selected CAHPS surveys. These include databases for a CAHPS Health Plan Survey, a CAHPS Home and Community-Based Services Survey, and a Child HCAHPS Survey. The databases are open to all users. They are meant to facilitate comparisons with survey results. Dr. Hays ended by noting additional products from the program: An online portal where data reports can be downloaded, chartbooks with database results, de-identified data files for research projects, and private feedback reports that compare a submitter’s results to database averages.
Susan Edgman-Levitan, another investigator within the CAHPS program, spoke about working with stakeholders and partners. Users and partners include federal agencies, state initiatives, state Medicaid and CHIP programs, and advocacy organizations. All major patient experience vendors use CAHPS survey items. The CAHPS program engages in outreach, collaborations, research summits, webcasts, and resources/research in quality improvement. Ms. Edgman-Levitan provided specific examples of collaboration, such as with the National Quality Forum’s Alignment Collaborative, the Organization for Economic Cooperation and Development Patient Safety Survey Developers, and the Partnership for Quality Measurement. Examples of stakeholder engagement include the Mental Health Stakeholder Expert Panel and the Childbirth Stakeholder Expert Panel.
The CAHPS program has supported a variety of annual research meetings, placing meeting summaries on the AHRQ website. It recently has produced national webcasts on subjects such as patient experience measurement and improvement, innovative feedback reporting, and a primer for new CAHPS survey users (all saved to the AHRQ website). The program has supported studies of quality improvement, such as a study of associations among quality improvement, patient experience measurement, culture, and employee burnout. The program created the CAHPS Ambulatory Care Improvement Guide focusing on domains measured by CAHPS surveys (now being updated).
CAHPS Discussion
Elizabeth Mort, MD, MPH, noted that her small breakout group, which met during the morning, had discussed the ambulatory care improvement guide, realizing that none in the group had ever accessed it. A good question for discussion would be along the lines of whether work to leverage what patients can tell us is supported. The small group had agreed that there is a need to obtain patient views on additional elements (diagnostics, coordination of care). Other surveys about patient concerns and other means for deriving information are needed. CAHPS should build on current strengths, expanding in areas including ambulatory care, non-acute conditions, home- based care, and access to care (surveys reach only consumers who show up for care). Surveys should be practical and used in real time. AI tools offer the promise of filling some gaps, such as time constraints on healthcare workers.
Ms. Edgman-Levitan responded that one CAHPS group is focused on diagnostic error and uses the information to indicate where physicians need coaching. She suggested a stronger emphasis on qualitative feedback from users unhappy with their survey results. Communicating with patient and family advisors is useful. Dr. Hays suggested that the use of shorter surveys can increase the response rates. Ms. Hernández-Cancio encouraged the program to use multiple avenues by which patients and families can provide qualitative information, which can include representative data on groups, leading to stratification. Ms. Edgman-Levitan added that the ambulatory guide includes a section on various qualitative methods that can lead to information supporting improvements. We need a stronger emphasis on ways to trigger the improvements.
Dr. Mireille Jacobson cited the issue of representativeness of survey respondents and what we know about the selection of patients in a survey and how that selection is used to inform how we interpret and respond to the data.
Joan Gelrud, RN, MSN, asked whether the ambulatory guide is being shared sufficiently to inform and improve customers’ experiences. Ms. Edgman-Levitan responded that many use it and there is a connection to evidence-based databases. Other guides used by vendors are similar. The guide is in the public domain. Amy Maclay Kilbourne, PhD, MPH, suggested marrying the tool with the concepts from implementation science. Perhaps AHRQ could support research in that area.
Dr. David F. Schmitz endorsed the Accreditation Council for Graduate Medical Education to inform students of these issues and teach how to provide feedback. Because maternity care is a very important issue right now, family physicians should be considered. Equity in rural locations also should be considered, such as the need for better transfers to higher levels of care (a workforce issue). Dr. Ginsberg added the role of critical access hospitals and the need to analyze their data.
Dr. Robinson relayed a note from the chat that suggested examining social media to obtain patient experiences. A related topic involved how many questions in such surveys should target leading vs. lagging indicators. In implementation, standardization can be desired yet, at times, personalization is helpful. Dr. Hays added that surveys allow for additional items (although applying too many will lower response rates). Ms. Edgman-Levitan added that CAHPS has a system for determining which elements are most critical and of greatest importance to patients.
Dr. Joedrecka S. Brown Speights, in considering prenatal care, asked whether the program also addresses pre-conception health and mental health (as in opioid use). Ms. Edgman-Levitan responded that the program has not yet addressed that area. She cautioned that it can be difficult to access private data for healthcare workers. Dr. Speights added the need to address matters of healthcare worker burnout. Dr. Ginsberg cited the use of supplemental items to address patient safety culture.
Dr. Catherine H. Ivory proposed that the program partner with educational organizations for nursing. It also might consider languages other than English and Spanish. Dr. Ginsberg stated the importance of respectful care, especially in maternal healthcare. Mr. Neil Goldfarb suggested that the program increase dissemination of the ambulatory care guide and information on CAHPS generally. He added that increased consumer awareness of what the survey can do and how data are used to improve care might improve response rates.
Dr. Carney asked whether the program has partnered with AHIP or similar organizations in addressing its early goal of providing information for health plan choices. Ms. Edgman-Levitan responded that the program has done so for the Health Plan Survey.
Dr. Elizabeth Mort considered the impact of feedback given to the provider. Some providers are less than delighted to receive such feedback and it is important to ask how we might improve the process of learning from the feedback. Ideas such as the use of incentives and the relevance of measures should be studied.
Komal Bajaj, MD, proposed harnessing the data from electronic health records (EHRs) to reach diagnostic excellence. Ms. Edgman-Levitan proposed employing the research talents of the developers of Open Notes.
Dr. Valdez closed the session by asking for ideas about improving the relationships among the three parties—AHRQ, sponsors, and vendors. Ms. Gelrud called on AHRQ to serve as a convener. Ms. Hernández-Cancio proposed that AHRQ serve to set priorities and identify gaps. Dr. Mort proposed that AHRQ support the designing of incentive programs relating to priorities. Dr. Speights proposed that AHRQ develop guidance for advancing a health equity lens.
Update on the Subcommittee of the National Advisory Council (SNAC) for National Action Alliance to Advance Patient Safety
Lucy A. Savitz, PhD., MBA, University of Pittsburgh Graduate School of Public Health (SNAC Chair)
Dr. Lucy Savitz reviewed the work of the SNAC for the National Action Alliance, reporting that the 16-member subcommittee convened four times in September and October. The discussion topics were as follows:
- The post-pandemic level-setting.
- Federal partner safety programs and the patient’s voice.
- Advancing the AIM recommendations (Learning Network, workforce safety).
- Processing recommendations.
The subcommittee produced an environmental scan of related work, identifying related activities, resources/tools, and potential partners. These were mapped to the four foundational areas of the strategic plan. There are many resources and many opportunities for leveraging. The group recognized that health equity refers to inclusion of the entire population and equitable participation opportunities for relevant stakeholders. The program will involve all levels of care. The National Action Alliance support structure will feature four constituents: a national steering committee, federal partners, intervention groups, and patients/families/private partners. Dr. Savitz presented recommendations in four areas, listing some subgoals and suggested actions.
The program will have an overarching aim as follows:
Every healthcare system and supporting organization in the United States will commit to operationalizing the foundational elements of the National Action Plan to ensure safer care everywhere for all.
An example of a recommended action is that healthcare systems will complete a baseline self- assessment by December 2024. Dr. Savitz noted that we know what to do yet we are not always doing it. There is a role for implementation science, such as in taking an action from one setting and adapting it for another.
Another major aim is in the area of engineering safe practices. The SNAC recommends the following:
Through partnership with technology vendors, FDA, ONC, and other relevant partners, the HHS Action Alliance will drive measurable changes in healthcare technology to increase the proportion of devices and software that incorporate “safety by design” features that make it easy to follow the safer practices and hard to follow fewer safe practices.
Important questions included how we apply measurable changes in technology and how we design for safety. This is crucial for today’s transient healthcare workforce, which moves across settings. Standardized equipment can support safety. A suggested action is to identify, by December 2024, five key actions that stakeholders agree will facilitate engagement between stakeholders for optimized safety design of new high-frequency and high-risk healthcare technology.
Another major aim is in the area of building learning capacity. The SNAC recommends the following:
Aim to develop a healthcare safety-–focused Learning Network with a vision and aim to provide reliable safety for patients and staff. The Network will have a decentralized leadership and a centralized infrastructure to continuously learn and transparently track and report on improvement progress while minimizing reporting burden by patients and staff.
One action is to create continuous monitoring and reporting systems that will enable rapid-cycle improvement in patient and workforce safety. Healthcare systems must build programs that are evidence based. We need to re-establish the notion of community so that systems share rather than legally protect new and good ideas. Government will be needed to support the creation of a large-scale infrastructure.
A fourth major aim is in the area of advancing education/training. The SNAC recommends the following:
Aim to establish a set of safe-practice competencies that can be used in the education of healthcare safety leaders. Basic competencies can be developed for clinicians, healthcare administrators, and partners (e.g., developers, manufacturers, pharma) who are involved in safety management activities.
A suggested action is to establish, by July 2024, a set of safe-practice competencies that can be applied in the education and continuing training of healthcare safety leaders. Administrators need to be educated along with healthcare staffs. There has been almost a normalization of violent and otherwise harmful behaviors against healthcare staff members. We must get people to report such behavior rather than assuming it.
In addition, the subcommittee made the following research recommendation:
Establish and fund a cross-agency research agenda on high-priority safety gaps to address policy, payment, and practice knowledge needs that will support the National Action Alliance.
We need data that are actionable. We need alignment across the work of the federal agencies. We need to align incentives.
Discussion
Ronald M. Kline, MD, presented ideas from another of the pre-meeting breakout groups. One issue discussed was the interoperability of data—how they are being shared, how they are or are not aligned, and how that relates to patient safety. With regard to clinical decision support (CDS), the group had discussed thresholds, what is meaningful, and what is unnecessarily negative. We need CDS that is initiative-driven rather than lawyer-driven. The group had discussed standardization in clinical pathways to drive safety and quality. In discussing workplace staff safety, the group had noted the preponderance of two threats, intoxication and behavioral illness. It endorsed the concept of “safety by design.”
Dr. Savitz stated that CDS procedures lead to a problem of burden on the care team. As for AI in general, the question was posed whether it should be offered if users are not interested. Krista Hughes, BCPA, added that the group had stressed the importance of the continuum of care (birth to death), care coordination, and the voice of the patient for learning.
Jiajie Zhang, PhD, cited the idea of making the testing of patient safety systems mandatory. One opportunity is to work with vendors and the public together to design for safety. Dr. Savitz agreed, noting that multiple EHR systems may be at work in a single healthcare operation.
Dr. Bajaj called for studies of tried-and-true tools, which AHRQ could support. It could study ways to integrate equity surrounding those tools (the “structure of safety”). Dr. Bajaj encouraged AHRQ to consider healthcare simulation programs used in training. Dr. Savitz added that, in considering equity, we must pay attention to cultural issues and barriers.
Lemrey Carter, PharmD, MS, cited the need to define the healthcare system. AHRQ could support development of an information-sharing network.
Ms. Hernández-Cancio agreed with the idea of sharing rather than competing when it comes to safety in healthcare systems. As hospitals realize reduced margins, they will have to turn to evidence-based practices. Regarding equity, we must consider potential biases in AI and algorithms. Dr. Savitz suggested applying “the value equation” rather than return-on-investment when considering issues of fiscal health and healthcare safety. Evidence is important.
Dr. Ivory proposed that interoperability become a standard rather than an add-on. We should use evidence to determine what we should be doing and what we should stop doing. We should reduce unnecessary care variation, such as in nursing practice.
Mr. Goldfarb noted that provider organizations are seeking risk contracts and value-based contracts. AHRQ might study how that might drive safety by, for example, building into the contracts metrics for safety. That could lead to good economics in addition to safety.
Dr. Mort referred to the overarching aim and asked how it can be accomplished. Dr. Savitz responded that, for example, there are tools for creating assessments. The impetus for conducting assessments could vary. Some related activities are already taking place. Dr. Mort wondered, in considering the engineering aim, whether vendors could offer a vehicle for safety reporting on the use of tools.
Dr. Carney asked about the role of safety in telemedicine, especially when it is backed by private equity not beholden to a health system. Dr. Savitz responded that there seems to be almost no research being conducted in that area. Dr. Carney added that, in the behavioral health area, there are many apps that do not ask about suicide because of a concern for liability.
Ms. Gelrud noted that sometimes safety is more expensive but worth it. Regarding the call for safety assessments, the ambulatory world is especially in need of them. Sharing data relating to safety can be difficult for a number of reasons (e.g., patient protection). Ms. Gelrud stated that we need to study the ways to embed processes. Dr. Savitz added that we need journals that will publish research on implementation. We need to consider sources of data for research. Dr. Amy Maclay Kilbourne suggested that AHRQ provide leadership in the implementation research area, perhaps encouraging pragmatic trials.
Dr. Ronald Kline stated that one of the biggest healthcare safety risks is understaffing, and he asked for solutions. Dr. Savitz stated that, because of staff reductions in hospitals, there can be healthcare workers who are not up-to-speed on some tasks they are asked to complete. The problems are many, such as burnout and professionals avoiding jobs or leaving positions in rural areas.
Dr. Bajaj noted that a recent study found that of hospitals at greatest financial risk, many had top safety ratings and that it is important to ask how risk and ratings are aligned.
Dr. Schmitz stated that healthcare worker safety is related to patient safety. We must ensure that providers are given training in handling high-risk situations. There should be rapid-response plans and resources.
Vote
Dr. Robinson asked the NAC members to vote on accepting the SNAC’s recommendations for the National Action Alliance to Advance Patient Safety. The NAC members voted, accepting the recommendations.
Update on the Subcommittee (SNAC) for AHRQ’s Patient-Centered Outcomes Research Trust Fund Investment
Karin Rhodes, MD, MS, AHRQ, Michael F. Dulin, MD, PhD, University of North Carolina at Charlotte (SNAC Chair), Therese Miller, DrPH, AHRQ
Dr. Karin Rhodes began a session on the SNAC that has been considering AHRQ’s strategic use of the funds provided by the Patient-Centered Outcomes Research Trust Fund (PCORTF). Dr. Rhodes stated that the SNAC would be presenting recommendations and reporting on a new funding opportunity. The PCORTF was created to help move evidence-based care into practice. Dr. Rhodes noted how PCORTF funds are distributed, with 80 percent going to the Patient- Centered Outcomes Research Institute, 16 percent going to AHRQ, and 4 percent going to ASPE to build a data infrastructure. AHRQ’s funds are to be used for evidence dissemination and the training of patient-centered outcomes research (PCOR) researchers. The funding gives AHRQ the ability to employ strategic planning over years.
Dr. Michael Dulin listed AHRQ’s PCORTF team and the members of the associated SNAC. He described charges to the SNAC, including developing a portfolio of projects in strategic national priority areas, considering innovative approaches and methods, and considering issues in communication, dissemination, implementation, stakeholder engagement, and training. He stated that the subcommittee had four full meetings in the past months, and he presented the strategic framework that AHRQ developed for guiding the use of the funds.
In the area of primary care, the SNAC recommends the following:
Advance the knowledge of primary care delivery
Address issues of access and health equity
Develop metrics and incentives
In the area of health equity, the SNAC recommends the following:
Align investments with opportunities
Build community capacity
Find incentives to sustain change
Inclusively redefine priority populations
In the area of stakeholder engagement, the SNAC recommends the following:
Universal stakeholder engagement plans
Adopt best practices
Metrics and incentives to evaluate and sustain impact
The SNAC members also had discussed the possibility of continuing the subcommittee for another year, an idea for the NAC members to consider.
Dr. Therese Miller reported on a recent Notice of Intent to publish a Funding Opportunity Announcement to create state-based Healthcare Extension Cooperatives that will accelerate implementation of actionable evidence into practice. The program will convene public and private stakeholders who will address barriers to high-quality care at state and local levels. These will include state Medicaid programs, health systems, and more. The project will address issues in payment, technology, workforce, and implementation. The cooperatives will provide extension services to help healthcare systems and practices engage in dissemination and implementation of evidence-based practices. One goal is to reduce the time it takes for actionable evidence to get into clinical practice. Another goal is to create an ongoing infrastructure at the state level to build capacity.
Discussion
Dr. Speights reported on her morning breakout group’s discussion. The group had considered the potential overlap of (1) developing structure around a learning health system and (2) examining the structure of PCOR. Another idea was the inconsistent knowledge about where collected data reside and how the data can be curated consistently across settings as well as how stakeholders can be engaged who are outside academic health systems. In developing this work, we should ensure that we are not creating parallel systems and not siloing information but integrating it.
Dr. Jiajie Zhang stressed two driving forces for big change in primary care today—telemedicine and AI. Because of new AI, much healthcare machinery can do more than before, making the primary care practitioner more efficient and effective.
Dr. Dulin noted that there have been conversations about improving the engagement of the SNACs, as in interactions of multiple SNACs. The SNAC report for the PCORTF investment includes discussions of the use of data and EHRs. The subcommittee supported finding partners outside the usual stakeholders to build capacity. The members suggested not replicating an onerous review process and to work across silos. For primary care, we must allow the development of a good patient relationship without hindrances.
Dr. Schmitz noted that the SNAC members had discussed the promise of community-based participatory research networks and recommended them. They suggested prioritizing stakeholder engagement and effective dissemination and implementation. Those activities should be studied for effectiveness.
Mr. Goldfarb noted that the SNAC’s discussions ended mostly with considerations of primary care and health equity, with stakeholder engagement having a large role. He endorsed the idea of continuing this SNAC to flesh out a primary care agenda.
It was suggested that the new extension cooperatives project have a focus on new models for community engagement. Dr. Miller agreed, suggesting expansion of participating personnel in the communities. Dr. Ivory added the use of other settings such as faith-based communities and healthcare in schools. She cited the need to improve the attribution of caregivers in our data and to ask who is providing the primary care.
Dr. Mort expressed interest in hearing more about the idea of learning systems in statewide programs. Dr. Miller responded that the extension cooperatives will support learning in communities, such as in getting past barriers to care. Dr. Robinson warned that AHRQ must not take on too much.
Dr. Dulin stated that we need to develop more evidence for defining optimized healthcare delivery, recognizing that the evidence will vary by setting. We must advance knowledge. Ms. Hernández-Cancio agreed on the need to tailor to local communities. She added that primary care today involves teams. We need to determine what is most relevant for the teams.
Mr. Goldfarb asked whether, for the extension cooperatives, the intended applicant is a department of the state or other entity. Dr. Miller responded that this is yet to be determined.
Vote
Dr. Robinson asked the NAC members to consider and vote on whether to accept the SNAC’s recommendations. The members voted, accepting the recommendations.
Dr. Robinson then asked the NAC members to consider the second issue for a vote—whether the SNAC should be extended for another year. This involved discussion. Dr. Robinson asked what the charge to the subcommittee would be for a third year. Dr. Dulin suggested that it would involve the engagement component of the work, the implementation. Dr. Rhodes added that the strategic framework cites a goal of stakeholder engagement. The SNAC could develop new ways to obtain broad stakeholder input. It could provide feedback on that and other projects. Dr. Robinson asked that we be concrete in defining an additional SNAC and charge. Mr. Goldfarb proposed the idea of fleshing out a primary care metrics. Dr. Mort suggested that more context is needed to make a decision to go forward. Ms. Hernández-Cancio agreed, asking what the output would be. Dr. Robinson concluded that a clear charge has not been put forward. Dr. Rhodes noted that a SNAC could make recommendations for the ongoing portfolio analysis in light of the strategic 13rameworkkframework. However, a SNAC should not be for programmatic oversight. Dr. Robinson proposed that the SNAC come back later with a crisp, clear charge that the NAC can consider fully. Dr. Rhodes responded that the SNAC can confer in its final meeting in early 2024" and report to the NAC at the NAC’s March 2024 meeting for discussion and a vote. The NAC members approved that plan.
Public Comment
Shannon Davila, MSN, RN, of ECRI, thanked the council for the opportunity to speak and presented the following: “I would like to bring attention to an important diagnostic safety issue. I encourage the council and AHRQ to continue to support engagement and safety efforts around vulnerable populations, including military veterans. A critical aspect to achieve total systems safety is designing a healthcare delivery system that facilitates equitable care for all patients. A major component of this is building a partnership between patients, families, and healthcare providers. Patients and families should be actively involved in care-making decisions and partners in improving healthcare safety, including diagnostic safety, which, by one study, accounts for nearly 60 percent of all medical errors experienced by patients. Patient and family engagement is one of the four foundational drivers of the National Action Plan to Advance
Patient Safety and a priority focus of the President’s Council of Advisors Science and Technology Report of the transformational effort on safety. Developing strong patient-provider relationships has become even more complex when forging partnerships with vulnerable populations who may have risk factors for significant health problems that go unrecognized, such as individuals who served in the military. The environment in which military service personnel live and work creates risk for a wide array of health conditions, without an effective process to assess for these risks. Healthcare providers are potentially missing opportunities to properly diagnose and treat veterans. Toxic exposure-related injuries have become a growing concern in the military veteran population. Veterans exposed to burn pits, radiation, agent orange, and other toxic materials during their military service are risks for a multitude of health conditions. In August of 2022, the Sergeant First Class Heath Robinson Honoring Our Promise to Address Comprehensive Toxics, or the PACT Act, became federal law and expands healthcare and benefits for veterans exposed to burn pits and other toxins, It is largely regarded as a significant expansion of VA health coverage for toxic exposures in 30 years. In addition to toxic exposure risk, mental health risks are also a top concern for veterans. Now, while the VA health system has structures in place to meet the unique needs of veterans, the civilian healthcare sector largely does not, creating inequities for those veterans who seek healthcare outside the VA health system. By taking a total-systems approach to safety, healthcare leaders, including those within civilian and VA health systems, should examine the system factors and how those contribute to failures that healthcare providers must manage along with the unique health needs, including diagnostic needs, of veterans. ECRI wants to acknowledge the work that AHRQ has done in recent years to advance implementation of diagnostic safety. We urge Dr. Valdez and other leaders to continue to focus on improving engagement of patients and diagnostic safety in the most vulnerable populations, including military veterans. Thank you for this opportunity to comment.”
Aaron Abend, MBA, of Autoimmune Registry, Inc., a non-profit organization that provides a hub for research, statistics, and patient data on all autoimmune diseases, presented the following: “We aim to become a trusted source where patients with these diseases can find credible, scientifically supported information about their diseases, promising treatments in the pipeline, and accurate prognosis insights. Whenever necessary, we will direct patients to our patient advocacy partners for further resources and information. Autoimmune diseases affect an estimated 60 million people in the United States, and, as a group, are the seventh leading cause of death for women between 15 and 65. Our list of more than 160 diseases includes 106 for which there is clear evidence of autoantibodies, T-cell activation, or other measurable immune dysfunction. But just as important are more than 50 conditions, maybe not yet really diseases, where there is a lack of understanding of their cause. They are suspected by many in the public as being autoimmune, in part because they affect women twice as often as men. More research on all of these diseases is needed. The quality of the diagnostic process in particular is poor for many of those with autoimmune disease. One may go for 5 or 10 years without a correct diagnosis. My mother went for 10 years without a correct diagnosis of her Sjögren’s disease. We ask AHRQ to consider research on these conditions to track and reduce the time of diagnosis, compute prevalence statistics, ensure that these diseases receive the attention of healthcare providers, and receive appropriate funding to improve upon existing protocols and disease management strategies. The autoimmune registry can help to represent the voice of the patients in this work. Thank you very much for your time.”
Chair's Wrap-Up and Final Comments
Dr. Robinson thanked the NAC members who were rotating off the council and asked them to offer any final thoughts. They all agreed that they had learned much. Dr. Schmitz asked the members to continue to think of rural America. Dr. Andrew D. Auerbach stated that the changes in healthcare are a challenge. Dr. Ivory asked the group to consider the voice of the nurse. Dr. Speights asked the members to continue to address equity and the value of all people and to address, in particular, medical education.
Dr. Robinson thanked the entire group and noted that the next NAC meeting is scheduled for March 24, 2024. He adjourned the meeting at 4:00 p.m. (Eastern Time).
Respectfully submitted,
Edmondo J. Robinson, M.D., M.B.A., M.S., Chair
National Advisory Council
Agency for Healthcare Research and Quality
