Setting a National Agenda for Surgical Disparities Research

Clinical Review & Education
Special Communication
Setting a National Agenda for Surgical Disparities Research
Recommendations From the National Institutes of Health
and American College of Surgeons Summit
Adil H. Haider, MD, MPH; Irene Dankwa-Mullan, MD, MPH; Allysha C. Maragh-Bass, PhD, MPH; Maya Torain, BS;
Cheryl K. Zogg, MSPH, MHS; Elizabeth J. Lilley, MD, MPH; Lisa M. Kodadek, MD; Navin R. Changoor, MD;
Peter Najjar, MD, MBA; John A. Rose Jr, MD, MPH; Henri R. Ford, MD, MHA; Ali Salim, MD; Steven C. Stain, MD;
Shahid Shafi, MD, MPH; Beth Sutton, MD; David Hoyt, MD; Yvonne T. Maddox, PhD; L. D. Britt, MD, MPH
Health care disparities (differential access, care, and outcomes owing to factors such as
race/ethnicity) are widely established. Compared with other groups, African American
individuals have an increased mortality risk across multiple surgical procedures. Gender,
sexual orientation, age, and geographic disparities are also well documented. Further
research is needed to mitigate these inequities. To do so, the American College of Surgeons
and the National Institutes of Health–National Institute of Minority Health and Disparities
convened a research summit to develop a national surgical disparities research agenda and
funding priorities. Sixty leading researchers and clinicians gathered in May 2015 for a 2-day
summit. First, literature on surgical disparities was presented within 5 themes: (1) clinician,
(2) patient, (3) systemic/access, (4) clinical quality, and (5) postoperative care and
rehabilitation-related factors. These themes were identified via an exhaustive preconference
literature review and guided the summit and its interactive consensus-building exercises.
After individual thematic presentations, attendees contributed research priorities for each
theme. Suggestions were collated, refined, and prioritized during the latter half of the
summit. Breakout sessions yielded 3 to 5 top research priorities by theme. Overall priorities,
regardless of theme, included improving patient-clinician communication, fostering
engagement and community outreach by using technology, improving care at facilities with a
higher proportion of minority patients, evaluating the longer-term effect of acute
intervention and rehabilitation support, and improving patient centeredness by identifying
expectations for recovery. The National Institutes of Health and American College of
Surgeons Summit on Surgical Disparities Research succeeded in identifying a comprehensive
research agenda. Future research and funding priorities should prioritize patients’ care
perspectives, workforce diversification and training, and systematic evaluation of health
technologies to reduce surgical disparities.
JAMA Surg. doi:10.1001/jamasurg.2016.0014
Published online March 16, 2016.
H
ealth care disparities, ie, differences in the burden of disease, injury, violence, or opportunities to achieve optimal health experienced by socially disadvantaged populations, have been well documented.1-3 Disparities are historically
linked to race/ethnicity, socioeconomic status (SES), disability, and
sexual orientation/gender identity. For example, a 2006 Medicare
study4 found that African American individuals had higher mortality rates for 88% of surgical procedures. However, hospital volume
accounted for some of this disparity, illustrating the interconnectedness of surgical disparities.4,5 Similarly, a 2010 study6 of national
inpatient data found that each incremental increase in SES was associated with a 7% decrease in mortality risk across numerous
cardiovascular and oncologic procedures.
Surgical disparities can occur along any part of the patient care
continuum including access, quality of care, and outcomes. They are
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Author Affiliations: Author
affiliations are listed at the end of this
article.
Corresponding Author: Adil H.
Haider, MD, MPH, Center for Surgery
and Public Health, Department of
Surgery, Brigham and Women's
Hospital, 1620 Tremont St, Ste 4020, Boston, MA 02120 (ahhaider
@partners.org).
documented in numerous specialties7 and are associated with
race/ethnicity,1,3,8-12 sex,13-15 age,10,16-18 and geography.19-21 Further research and interdisciplinary collaboration are needed to understand
the interrelated factors that affect patient experiences in the surgical
setting.1,3,4,7,8 In acknowledgment of these issues, the National Institutes of Health (NIH) and American College of Surgeons (ACS) came
together to create a national research agenda to inform surgical disparitiesresearch.TheNIH-ACSSummitonSurgicalDisparitiesResearch
was held May 7 to 8, 2015, at the NIH campus in Bethesda, Maryland.
Partnership: NIH and ACS
Both the ACS and the NIH (across its various institutes and particularly through the National Institute of Minority Health and Dispari(Reprinted) JAMA Surgery Published online March 16, 2016
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Clinical Review & Education Special Communication
Setting a National Agenda for Surgical Disparities Research
Box 1. Day 1 Research Priorities Compiled in Order of Frequency (N = 440)
• Definition of cultural competency/dexterity and its role in agency
• Tailored management protocols and guidelines, eg, screening
guidelines
• Best practices for cultural competency training, eg,
standardization, implementation, and curricula
• Policy checks and evaluation, eg, Medicaid expansion evaluation
and outcomes
• Regional variation in culture vs uniform training
• Integration and coordination of care services
• Evaluation of the effect of cultural competency training
• Centers of excellence and regionalization of care
• Incentivizing cultural competency training and/or diversification
of the health care workforce
• Use of safety net hospitals
Clinician Factors (n=105 Initial Suggestions)
• Role of patient-clinician communication and trust in surgical
outcomes
• Specific study ideas, eg, evaluation of shared health care decision
making
• Engagement between clinicians and patients
• Patient advocacy and navigation services
• Adoption of technologies
• Evaluation of implicit bias and “unlearning” biases interventions
• Social determinants of health
• Evaluating multiple levels of implicit bias, eg, individual,
institutional, and setting
Clinical Care and Quality Factors (n=70 Initial Suggestions)
• Race/ethnicity/sex/minority patient-clinician dis/concordance
• Guideline creation, dissemination, and compliance, eg, best
practices for screening guidelines
• Use of metrics to evaluate surgical quality
• Effect of new and existing incentives strategies
• Effect of centralized vs regionalized care on surgical outcomes
Patient Factors (n=116 Initial Suggestions)
• Explanatory power of specific structural metrics, eg, effect sizes
and measurement issues
• Patient education and health literacy
• Quality metric development, measurement, and implementation
• Geography, eg, access to care, travel time, and geocoding
• Patient perceptions and decision making
• Prioritization of outcomes for patients, eg, shared health care
decision making
• Data collection and databases, eg, self-report data and use of proxy
measures
• Role of technology and electronic health records in patient tracking
and loss to follow-up
• Assessing and evaluating preoperative comorbidity and risk, eg,
obesity and diabetes
• Tools and methods for understanding disparities, eg, patient
registries, qualitative inquiry
• Role of social support on patient engagement in care
• Patient navigation and advocacy
• Defining and evaluating socioeconomic status and cost to patients,
eg, out-of-pocket cost to patients
Postoperative Care and Rehabilitation Factors
(n=55 Initial Suggestions)
• Patient-clinician communication
• Study of longitudinal outcomes, eg, quality of life, functional status,
and employment outcomes
• Best practices for patient interventions to improve surgical care
outcomes
• Strategies to increase patient engagement in health care
• Role of biology and genetics in disparities and related risk factors
• Engagement of marginalized groups in research, eg, immigrant
health, religious groups, and Indian Health Services
• Patient behaviors, attitudes, knowledge, and beliefs about health
and surgical care
• Effect of technology and social media on surgical outcomes, eg,
mobile health interventions
• Assessing insurance-related factors among patients and outcomes
Systemic and Access Factors (n=90 Initial Suggestions)
• Evaluating the effect of specific interventions, eg, regional quality
metrics
• Effects of various payment strategies, eg, relative value units
• Evaluation of disparities in palliative and end-of-life care
• Increasing access and use of rehabilitation for underinsured
populations
• Postoperative care for patients in rural settings
• Wraparound services and continuity of care
• Role of social support (eg, in rehabilitation) and adherence
• Exploring multidisciplinary approaches to disparities in functional
outcomes and quality of life
• Establishing best practices for rehabilitation quality and nursing
facility care
• Effect of patient culture and language barriers on postoperative
outcomes
• Culturally competent shared decision making and incorporation of
functional outcomes discussion for all patients
• Data and information management/technology in health care
systems
ties) prioritize research to mitigate surgical disparities. The ACS
formed the Committee on Optimal Access in 2013, stating that “optimal access is the key to quality of care.”22 The committee’s goals
are to develop metrics to assess health care disparities in the various disciplines of surgery, strategies for addressing health care disE2
parities in select surgical environments, best practices in combating surgical disparities, and resources to address health care
disparities in surgical patient care.22
The NIH established the National Institute of Minority Health and
Disparities in 2000, with the mission to lead research to improve
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Special Communication Clinical Review & Education
Setting a National Agenda for Surgical Disparities Research
health disparities by planning, coordinating, and evaluating health
disparities research; conducting and supporting research in
health disparities; promoting and supporting the procurement of a
diverse research workforce; translating research information; and
fostering collaborations.23 On the basis of this shared vision for procuring equity for all patients, the NIH and ACS identified joint deliverables to inform their shared aims.24 Among these were formation
of a research agenda to guide future investigation of surgical disparities and funding priorities to assist federal, state, and private
organizations in their support of surgical disparities research.24
Planning for the NIH-ACS Summit on Surgical
Disparities Research
The planning committee for the summit consisted of leadership from
both organizations. They jointly identified and invited experts to the
summit that had extensively published peer-reviewed disparities research (eAppendix in the Supplement) and were nationally recognized in the field. The literature review was used to help identify
participants. To organize the content discussed in the summit, the
planning committee conducted an exhaustive literature review to
identify potential thematic areas of surgical disparities research. Further details on our methods and results of this search are now available on the ACS website.24 Planning committee researchers synthesized findings into 5 thematic topics: (1) clinician factors (including
physicians, surgeons, nurses, nurse practitioners, physician assistants, and students), (2) patient/host factors, (3) systemic factors
and access factors, (4) clinical care and quality factors, and (5) postoperative care and rehabilitation factors. This article presents the
thematic areas that guided the summit, organization of thematic
and breakout sessions at the summit, and the outcomes of these
sessions.
Summit Format
Attendees of the 2015 NIH-ACS Summit on Surgical Disparities
Research represented a diverse group of surgeons, researchers,
and staff with knowledge and practical experience with surgical
disparities research or were content experts from other fields
within health care disparities research. Many attendees and planning committee members had diverse clinical experiences and
represented multiple countries and racial/ethnic groups. Approximately half of attendees were women. Attendees were also
diverse in their experiences in providing care in urban, suburban,
and rural settings across multiple geographic regions of the
United States, both in community hospitals and academic medical centers.
Following an introduction to the summit and overview of
deliverables, the summit conducted an interactive discussion of
5 empirically based thematic areas derived from the literature
described earlier. For each theme, a surgical research fellow presented an overview of literature in that field. Next, a nonsurgeon expert in the field presented an elaboration of the literature in each
theme, commenting on knowledge gaps and proposing future directions. A video giving further details of this summit format can be
found at the ACS website.24
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Box 2. Five Overarching Priorities Identified for Surgical
Disparities Research at the 2015 National Institutes
of Health and American College of Surgeons Summit
Research Should Be Directed Toward:
1. Improving patient-Clinician communication by helping clinicians
deliver culturally dexterous, competent care and measuring its
effect on the elimination of disparities.
2. Fostering engagement and community outreach by using
technology to optimize patient education, health literacy, and
shared decision making in a culturally relevant way;
disseminating these technologies; and evaluating their effect on
reducing surgical disparities.
3. Improving care at facilities with a higher proportion of minority
surgical and trauma patients. This includes evaluation of
regionalization of care vs strengthening of safety-net hospitals
within the context of differential access and surgical disparities.
4. Evaluating the longer-term effect of acute interventions and
rehabilitation support within the critical period of injury or
illness on functional outcomes and patient-defined perceptions
of quality of care.
5. Improving patient centeredness by identifying expectations for
postoperative and postinjury recovery. This includes adhering to
patient values regarding advanced health care planning and
palliative care needs.
Synopsis of Thematic Presentations
Clinician Factors
Clinician-level factors in surgical disparities refer to variations in physician practice related to factors such as level of training.4 Disparities in clinician factors have been reported, with African American
patients receiving less colon, prostate, and lung resections than
other groups.25-30 Simulated studies demonstrated the effect of
implicit bias on physician decision making and require real-world clinical assessment.31-34 Extant research suggests that racial/ethnic minorities receive more racially discordant health care than white
patients,1,3 which may contribute to poor physician-patient communication. This can affect ascertainment of informed consent, collection of social histories, and adherence to postoperative care
instructions.35 Research is needed to understand the role of cultural dexterity, defined as knowledge, skills, and awareness of physicians in patient interactions in surgical care.36
Patient Factors
Numerous patient factors have been identified as contributors to
surgical disparities, including demographic (eg, race/ethnicity), physiologic (eg, immune status), and culture (eg, language). Compared
with white patients, when African American patients undergo surgery, they have higher operative mortality and morbidity than white
patients.37-46 Compared with more affluent patients, patients with
low SES are less likely to receive appropriate surgical services.47,48
Disparities have also been demonstrated for coronary artery bypass grafting, mitral valve procedures, and other surgical outcomes for women compared with men.49,50 Future research must
focus on mitigation of disparities via patient-clinician education and
systematic approaches to health care equity.
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Systemic and Access Factors
Systemic and access factors are issues related to patient access
to care including health care coverage policies and clinical
protocols. 5,51 Systemic and access factors often interact. For
example, while universal health care coverage in Massachusetts
reduced disparities in the receipt of minimally invasive operations
for common abdominal ailments,52 other systems-level policies to
increase access have exacerbated disparities among low-income
and disadvantaged populations.53,54 Race/ethnicity and/or SES
disparities have been demonstrated in care access and procedures such as emergent vs elective hernia repairs and limb salvage vs amputation in critical limb ischemia.55-62 Future research
is needed to understand factors, such as time between diagnosis
and surgical referral and delays in seeking acute care, to reduce
surgical disparities.57,60-63
Clinical Care and Quality Factors
The Institute of Medicine defines quality as “the degree to which
health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current
professional knowledge.”64 Disparities can be conceptualized as
factors related to structure, process, and outcomes.65 Structural
variation accounts for some between-hospital quality differences in
outcomes, such that minority patients living in low-SES zip codes are
more likely to present to hospitals with low structural quality and
experience worse outcomes.66-70 Process variations, including
choice of procedure, adherence to guidelines, and specialty referral, have all been linked to minority patient status.67,71-77 Less is known
about other demographic associations with clinical care and quality, including immigration status, language, rurality, sexual orientation, and gender identity. Future research is needed to understand
and promote redesigned care pathways, systems demonstrations,
and enhanced measurement and incentives to yield high-value,
equitable care.
Postoperative Care and Rehabilitation Factors
Relative to other areas of disparities, little is known about disparities in postoperative and rehabilitative care. Previous
research provides evidence of racial, ethnic, and insurance disparities related to access to postacute care after traumatic brain
injury, spinal cord injury, and orthopedic surgery. 78-82 Even
among patients who receive inpatient rehabilitation, there are
still disparities in functional outcomes83,84 and timing and use of
adjuvant.85,86 African American and Hispanic women are more
likely to have late initiation of chemotherapy and incomplete
treatment, less follow-up, and increased mortality rates relative
to white oncology patients,85,86 with lower life satisfaction and
higher unemployment.87,88 Other studies demonstrate mismanaged care preferences among these groups as well. 89 More
research is needed to investigate the social determinants of
health in postoperative recovery, long-term outcomes, palliative
care, and end-of-life care.
Identification of Research Priorities
Summit attendees participated in a thematic ranking exercise over
the course of the conference. The entire process was overseen by a
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Setting a National Agenda for Surgical Disparities Research
PhD-trained health disparities researcher with expertise in qualitative methods. On day 1, a 3-step process was implemented. First, at
the completion of each thematic presentation, attendees generated free-response comments by theme. These recommendations
were collected at the conclusion of all of the presentations. Next,
using pile sorting methods, cards were sorted and collated by facilitators trained in qualitative methods. Third, cards were sorted by
similarity in qualitative content of questions, and all frequencies were
recorded, yielding between 5 to 15 popular topics per theme.
On day 2, attendees were assigned to 2 consecutive 1-hour
breakout sessions. Attendees participated in 2 different thematic sessions so that they could contribute both within and outside their
areas of expertise. Breakout sessions were each led by a trained facilitator and a surgical chair with relevant expertise. The coleaders
facilitated group discussion around etiology, vulnerable populations, ethical and methodological considerations, funding priorities, workforce diversity, and surgical training recommendations. During the first breakout session, each group was asked to narrow down
the list of topics that were compiled from day 1 to a list of up to 10
priority topics.
This was accomplished by considering the overall popularity of
the topics in day 1 and potential contributions of the topics to reducing surgical disparities, regardless of popularity. In the subsequent breakout session, a separate group of attendees assessed the
list generated by the first group and further refined it to identify up
to 5 priorities by theme. Results were shared with the entire summit to elicit final comments, and 5 overarching themes were determined. Final deliverables consisted of a list of 5 research priorities
by theme and a list of 5 overall research priorities, regardless of
theme. On day 1, nearly 60 individuals participated in identifying
research priorities for each of the 5 thematic areas. In total, more
than 440 comments were gathered, collated, and organized into
topics for day 2.
Results
Recommendations are detailed by respective theme. The Figure depicts a flowchart of how conference attendees participated in each
day of the summit thematic rankings. Box 1 reports the most frequent research topics and related research questions as identified
on day 1, which informed day 2 sessions. The Table reports the
results of the day 2 breakout sessions, and Box 2 details the top
overall research priorities, regardless of theme.
Clinician Factors
Day 1 thematic rankings yielded 105 questions related to clinician factors that contribute to surgical disparities (Box 1). Twelve themes
emerged after data collation including cultural competence/
dexterity, patient advocacy and navigation services, clinician communication, implicit bias/mindfulness, surgical quality metrics, and
racial and sex discordance. The most commonly identified topic was
the effect of cultural competence and/or dexterity on surgical disparities (37.1%; n = 39), followed by the effect of biases on care
(28.6%; n = 30).
The top 5 thematic topics for clinician-level factors identified
on day 2 were: (1) defining and evaluating standards of cultural
dexterity; (2) patient-clinician communication and evaluation of
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Figure. National Institutes of Health and American College of Surgeons
Surgical Disparities Research Summit: Data Collation Procedures
Day 1 methods: generation of 3 to 5 free response
comments on each of 5 thematic topics
(N = 440)
Table. Day 2 Top Research Priorities and Related Questions by Theme
Research Topic
Defining and evaluating
standards of cultural
dexterity
Day 1 results: individual topics of discussion ranked by theme
(N = 58)
Day 2 methods: 2 breakout sessions to refine day 1 topics
What is the definition of cultural
competency and its role in surgery?
What are the most effective strategies and
methods for cultural competency training?
How do you teach or learn cultural
competency?
How do we standardize clinician-level
education of cultural competency training
and when should it be implemented?
Clinician-patient
communication and
evaluation of clinician
training
Day 2 results: top 3 to 5 research priorities ranked by theme
(N = 23)
Final results: top overall research questions regardless
of theme (N = 5)
Sample Research Questions Generated
Clinician factors
What resources or tools are available for
dealing with challenging patients and
patients with language barriers?
How do we use translators effectively for
patient-clinician interactions?
What is the role of the patient navigator
and ancillary staff in improving
patient-clinician communication?
Implicit bias and mindfulness What are interventions to reduce or
training and evaluation
“unlearn” biases?
Can use of checklists reduce bias?
clinician training; (3) implicit bias and mindfulness training and
evaluation; (4) improvement and exploration of new and existing
surgical quality metrics; and (5) the role and effect of patientclinician concordance (Box 1). Recommendations for future studies call for focus on the definition and measurement of cultural
dexterity training and evaluation and investigating the effect of
ancillary staff on improving cultural competence. Training should
provide surgeons with the tools to deliver culturally relevant,
patient-centered care and adapt to patients of all different cultural
backgrounds. In addition, surgical workforce diversification was
discussed in breakout sessions as a method to increase cultural
dexterity.
Patient Factors
Day 1 thematic rankings yielded 120 research questions related to
patient factors (Box 1). Fifteen patient factor themes were identified including social support, socioeconomic status, incidental cost
of health care to patient, patient-clinician communication, effect
of interventions on outcomes, patient behaviors, technology/
social media, and insurance. The most commonly identified topics
were the role of patient education and health literacy in patientclinician communication (13.3%; n = 16); geographic and other
barriers to accessing care (11.7%; n = 14); and patient perceptions,
decision making, and engagement in personal health/behaviors
(10.8%; n = 13).
The top-priority topics identified on day 2 were: (1) the role of
patient education and health literacy in patient-clinician communication; (2) patient perceptions, decision making, and engagement
in personal health/behaviors; and (3) optimizing preoperative comorbidities and partnering with primary care physicians (Table). Additional recommendations were for tools to evaluate clinician communication and patient level of understanding. Interventions should
focus on allowing patients the autonomy to make informed decisions about their surgical health care based on accurate, timely, and
culturally dexterous communication. Finally, technologies, including social media and handheld devices, must be leveraged to educate patients and support patient decisions in a culturally competent manner.
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How does implicit bias apply to specific
groups of patients when gauged in terms
of race/ethnicity, gender, SES, sexual
orientation, weight, comorbidities, or
geography?
Improvement and
exploration of new and
existing surgical quality
metrics
How can report cards of patient experience
feedback affect outcomes?
Role and effect of
patient-clinician
concordance
How does patient-clinician concordance
affect outcomes? What outcomes can we
measure to assess concordance?
What metrics or measurement should be
used to evaluate the quality of a surgeon?
Does intersurgeon concordance play a
role in surgical disparities?
Patient factors
Role of patient education and Do we need different patient education
curriculum for different SES levels and
health literacy in
racial/ethnic groups?
patient-clinician
communication
Can we develop a tool to measure patients'
understandings of their disease and
expectations of outcomes?
Is community outreach or outreach in
schools effective to disseminate
knowledge?
Patient perceptions, decision
making, and engagement in
personal health and
behaviors
How do decision support tools affect
difference populations of patients?
How malleable are patient risk perceptions
and preferences?
Should patient choice be valued more
highly than surgical recommendations?
How can we address patient health prior
Optimizing preoperative
comorbidities and partnering to elective surgery (eg, obesity)?
with primary care clinicians
How can we improve preoperative
conditions to improve patient outcomes?
How do chronic conditions inform patient
outcomes?
(continued)
Systemic and Access Factors
Day 1 thematic rankings yielded 90 research questions related to systemic and access factors (Box 1). Thirteen systemic and access factor themes were identified including tailored management protocols
and guidelines, based on factors such as hospital volume and the effect of the social determinants of health on surgical disparities in systemic and access issues. The most commonly identified topics were
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Setting a National Agenda for Surgical Disparities Research
Table. Day 2 Top Research Priorities and Related Questions by Theme
(continued)
Research Topic
Sample Research Questions Generated
Clinician factors
Additional themes prioritized
during group discussion
1. Surgical applications of biology and
epigenetic factors, eg, tumor biology and
precision medicine, applied to specifically
further understandings of minority
health.
3. Factors affecting access to care, eg,
geographic location and barriers.
Systemic and access factors
What are other comparable service
measures that can be used by hospitals to
permit comparison of the amount of
resources required to perform various
services?
Care coordination and
integration and tailored
guidelines for vulnerable
populations
What are innovative strategies to promote
patient care coordination?
Regionalization of care vs
strengthening safety-net
hospitals
What are barriers and facilitators to
promoting regionalized care in surgery?
What strategies can be implemented to
retain patients for follow-up care after
surgical procedures?
What are the implications of building
existing infrastructure in safety-net
hospitals in the context of differential
access and surgical disparities?
How do the social determinants of health
affect surgical outcomes in the context of
systemic barriers to patient access to care?
How can social determinants inform future
interventions to improve access to care
and/or systemic policy change?
Evaluation of health
technology and electronic
health records’ effect on
research and surgical
outcomes
What are strategies to standardize and
incentivize use of the electronic health
record in surgical care?
How can the adoption of health information
technology be evaluated in its effect on
surgical outcomes?
Clinical care and quality factors
Leveraging evidence-based
medicine, eg, electronic
health records, to reduce
disparities and improve
adoption of evidence-based
care
How can “meaningful use” of electronic
health records improve evidence-based
care and patient outcomes?
Sample Research Questions Generated
Approaches for standardizing
and integrating existing data
repositories to mitigate
disparities
What are the existing barriers to ongoing
data reporting by health care organizations?
Evaluating methods for incorporating patient preferences
for treatment and expectations for outcomes in surgical
decision making
How do we engage patients in shared health
care decision making?
How can these barriers be overcome to standardize surgical care, quality, and follow-up?
How can we better incorporate patient
preferences in treatment courses?
How can we better assess patient
expectations for surgical care and/or patient
satisfaction?
the effects of payment strategies on access issues (eg, relative value
units, 13.3%; n = 12) and the use of data and information management
and technology in healthcare systems (11.1%; n = 10).
How do we incentivize shared
decision-making and its effect on surgical
outcomes?
What are innovative ways to incentivize
quality surgical care?
Developing and
implementing standard data
definitions for known and
suspected risk factors for
disparities
What is a working quality metric for use by
health care organizations and clinicians?
What is a standard definition of
“disadvantaged populations”?
How do we define and distinguish the
effect of race/ethnicity from factors such
as socioeconomic disadvantage and/or
health literacy?
Postoperative care and rehabilitation factors
Leveraging existing
databases and developing
needed methodology to
prospectively collect
long-term functional, quality
of life, and employment
outcomes
How can we develop databases to capture
longer-term outcomes, including
patient-centered outcomes such as quality
of life, functional status, compliance,
employment, independent living, and
disease/procedure-specific outcomes?
Evaluating communication
approaches regarding
end-of-life care, palliative
care, and postoperative or
postinjury expectations for
recovery
How do we characterize disparities in
palliative care and end-of-life care?
How do we implement and evaluate such
methods?
How do we better understand
discrepancies in advanced care planning
and quality among surgical patients?
How do we address disparities in access to
palliative care procedures?
How do language, cultural, and/or other
Exploring barriers to
prioritizing patients' values and barriers impede prioritizing patient
measuring the effectiveness of preferences' in postoperative care?
these strategies
How do we better engage patients with
limited health literacy?
Exploring the value of
postinjury and postoperative
recovery and rehabilitation
services in terms of cost,
quality, and patient-oriented
outcomes
How do we set metrics to evaluate
postinjury cost and quality and its effect on
surgical patient outcomes?
Improving access to physical
therapy, occupational therapy,
and speech therapy with
sustainable payment models,
eg, teletherapy, to improve
rehabilitative outcomes during
the critical postacute period
How do payment models and incentive
strategies affect postacute care follow-up?
How do we strengthen health centers'
infrastructure to standardize electronic
health record use?
(continued)
E6
Evaluating the effect of
incentive strategies on
disparities
What is the effect of relative value units in
the context of surgical disparities?
What are other methods of evaluating and
determining physician bonus plans based
partially on productivity and patient care?
Role of health care as a
mitigating factor of social
determinants of health
Research Topic
Clincal care and quality factors
2. Equity in access to clinical trials among
minority/disenfranchised patients.
Assessing the effects of
payment strategies in the
context of policy reform on
access to care
Table. Day 2 Top Research Priorities and Related Questions by Theme
(continued)
How do we reform existing postinjury and
postoperative rehabilitation care to
improve outcomes for disadvantaged
populations?
How do we evaluate the potential benefit
of tele-therapy to rural patients and/or
surgical patients of limited mobility?
How do we overcome financial barriers to
physical therapy, occupational therapy, and
speech therapy for patients of low SES
backgrounds?
Abbreviation: SES, socioeconomic status.
The top-priority topics identified on day 2 were: (1) assessing
the effects of payment in the context of policy reform, (2) care coordination and integration and tailored guidelines for vulnerable
populations, (3) regionalization of care vs strengthening safety net
hospitals, (4) role of health care as a mitigating factor of social determinants of health; and (5) the evolution of health technology and
electronic health records’ effect on research and surgical outcomes (Table). Additional recommendations were to develop strategies that improve access to care for populations that experience
surgical disparities. Beyond the effect of socioeconomic disadvantage, future research should assess the effect of the Affordable Care
Act in access to care for these populations.90
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Special Communication Clinical Review & Education
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Clinical Care and Quality Factors
Day 1 thematic rankings yielded 70 questions regarding clinical care
and quality (Box 1). Eight primary research themes were identified
from the questions. The most commonly identified topic was best
practices for developing and implementing evidence-based guidelines (22.9%; n = 16), followed by the effect of incentive strategies
and payment (17.1%; n = 12). The top 5 thematic topics identified on
day 2 were: (1) leveraging electronic health records to improve adoption of evidence-based care; (2) approaches for standardizing and
integrating existing data repositories to mitigate disparities; (3) evaluating methods for incorporating patient preferences for treatment
and expectations for outcomes in surgical decision making; (4) evaluating the effect of incentive strategies on disparities; and (5) developing and implementing standard data definitions for known and
suspected risk factors for disparities (Table). Recommendations were
to prioritize the establishment of effective and efficient quality
improvement strategies.
Future research should assess the effect of electronic health records adoption on disparities in surgical care. Research into surgical disparities often requires linking disparate data sets containing information on clinical outcomes, hospital structure, processes of care, and
patient demographic information. These linkages are currently challenging because of nonstandard definitions of data elements. As the
distinction between equal and equitable care becomes increasingly
clear, patient preferences and cultural factors must be taken into
account in surgical decision making. Finally, need for novel incentive
strategies in the context of pay-for-performance, bundled payments,
accountable care organizations, and public reporting was identified.
Postoperative Care and Rehabilitation Factors
Day 1 thematic rankings yielded 55 questions related to postoperative
care and rehabilitation factors (Box 1). Ten themes emerged, including
the study of longitudinal outcomes, evaluation of disparities in palliative and end-of-life care, the role of social support, and the effect of
patient culture on postoperative outcomes. The most commonly
identified topic was developing longitudinal methods for assessing
outcomes, such as quality of life and functional status (25.5%; n = 14),
followed by improving access to outpatient, end-of-life care, palliative
care, and advanced care planning (16.4%; n = 9).
The top research areas were: (1) leveraging existing databases
to prospectively collect data on long-term functional, quality-oflife, and employment outcomes and develop methods for this purpose; (2) evaluating communication approaches regarding end-oflife care, palliative care, and postoperative or postinjury expectations
for recovery; (3) exploring barriers to prioritizing patients’ values and
measuring the effectiveness of these strategies; (4) exploring the
value of postinjury and postoperative recovery and rehabilitation services in terms of cost, quality, and patient-oriented outcomes; and
(5) improving access to physical therapy, occupational therapy, and
speech therapy with sustainable payment models (eg, teletherapy) to improve rehabilitative outcomes during the critical postacute period (Table).
Top Overall Research Questions
The final deliverable for the 2015 NIH-ACS Summit on Surgical Disparities Research was the identification of 5 research questions to
jamasurgery.com
guide the surgical disparities research agenda (Box 2). Overarching
priorities, regardless of theme, called for the following: improving
patient-clinician communication, fostering engagement and community outreach by using technology, improving care at facilities with
a higher proportion of minority patients, evaluating the longerterm effect of acute intervention and rehabilitation support, and improving patient centeredness by identifying expectations for
recovery.
Discussion
The overarching purpose of the 2015 NIH-ACS Summit on Surgical
Disparities Research was to create a national research agenda for use
by clinicians, researchers, funding organizations, policymakers, and
other key stakeholders. The event established a national research
agenda intended to inform not only the future of the partnership between the NIH and the ACS but also to provide research agendas and
funding priorities for years to come.
The 2-day summit identified nearly 30 research priorities across
5 surgical disparities–related themes (clinician, patient, systemic and
access, clinical care and quality, amd postoperative care and rehabilitation factors), which were distilled into 5 overarching priority
research questions. Surgical disparities represent a complex problem that the collective community of policymakers, clinicians, researchers, funding bodies, and other stakeholders must address.
Evidence of this overlap can be seen in the commonality of recommendations for continued evaluation of patient-clinician communication as well as clinician training and patient education related to
both patient and clinician factors. Identified research priorities also
included overlap between systemic/access and clinical care/qualityrelated factors. Moreover, many of the known factors associated with
surgical disparities were common among the themes, namely
race/ethnicity,25-30 SES,49,50 culture,85,86 and geography.66-70 However, more research is needed to intervene and mitigate these
factors.
Much of the extant literature identifies sociodemographic factors that precipitate surgical disparities. More research is needed to
evaluate these issues long term to design interventions to mitigate
disparities. Specifically, research is needed to investigate sustainable models of delivering physical, occupational, and speech therapy
to patients and identify effects on recovery. Although 30-day morbidity and mortality have been historically important outcome metrics, they fail to capture the information that is most important to
patients because outcomes beyond 30-day morbitidy and mortality are likely the most pronounced. The effect of cultural barriers,
time constraints, and staff limitations and disparities as contributing factors in poor-quality communication about postsurgical
expectations for recovery is also formidable. Similarly, given that
women make up more than half of the US population, more research is needed to identify sex-specific risk factors and subsequent interventions that may mitigate surgical disparities.49,50 Finally, future research and funding entities should prioritize innovation
for improving patient-clinician communication via culturally dexterous approaches.
The findings entailed in this report are not without limitations.
The results represent the views of clinicians and scientists at a single
research meeting (N = 60). Representatives from affiliated fields,
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Clinical Review & Education Special Communication
Setting a National Agenda for Surgical Disparities Research
including health policymakers, educators, higher education and administrative officials, and philanthropic grant-funding organizations must be included in the ongoing dialogue and take steps to address surgical disparities. Additionally, representation of experts in
a wider array of surgical disparities would have been beneficial. For
example, researchers and clinicians from Indian Health Services, social scientists, women’s health groups, and integrated care and critical care access hospitals would have led to more diversity in perspectives. Also, because the NIH (National Rural Health Association)
holds an annual quality and clinical conference on rural health, we
opted to reach more researchers at academic medical centers to gain
their insights on research agenda setting.
Prioritization of topics was based on a priori identification of
themes. Given the interrelated nature of multiple causative agents
in health care disparities, other forms of categorization could also
apply. Other methods of data collation could also have been used
such as a larger online survey of scientists and clinicians or inclusion of nonphysicians/surgeons/research professionals. All health
care clinicians related to the surgical field, including nurses, medical assistants, physician assistants, nursing aids, and registrars, offer a unique perspective on research in surgical disparities. Ongoing efforts are warranted to further engage these voices. Moreover,
long-term care outcomes research is urgently needed to understand the needs of patients, their families, and their caregivers beyond events happening in the perioperative setting.
ARTICLE INFORMATION
Accepted for Publication: December 1, 2015.
Published Online: March 16, 2016.
doi:10.1001/jamasurg.2016.0014.
Author Affiliations: Center for Surgery and Public
Health, Harvard Medical School and Harvard T. H.
Chan School of Public Health, Boston,
Massachusetts (Haider, Maragh-Bass, Torain, Zogg,
Lilley, Changoor, Najjar, Rose, Salim); Department
of Surgery, Brigham and Women’s Hospital, Boston,
Massachusetts (Haider, Maragh-Bass, Torain, Zogg,
Lilley, Changoor, Najjar, Rose, Salim); National
Institute on Minority Health and Health Disparities,
National Institutes of Health, Bethesda, Maryland
(Dankwa-Mullan); Department of Surgery, Johns
Hopkins University School of Medicine, Baltimore,
Maryland (Kodadek); Department of General
Pediatric Surgery, Children’s Hospital Los Angeles,
University of Southern California, Los Angeles
(Ford); Department of Surgery, Albany Medical
College, Albany, New York (Stain); Office of Chief
Quality Officer, Baylor Scott and White Health
System, Dallas, Texas (Shafi); Division of General
Surgery, United Regional Hospital, Kell West
Regional Hospital, Wichita Falls, Texas (Sutton);
American College of Surgeons, Chicago, Illinois
(Hoyt); National Institutes of Health, Bethesda,
Maryland (Maddox); Department of Surgery,
Eastern Virginia Medical School, Norfolk (Britt).
Conflict of Interest Disclosures: None reported.
Funding/Support: The American College of
Surgeons provided financial support for travel
expenses and conference organization materials for
our invited guests. Summit attendees were not
provided honoraria for their attendance and
participation.
Role of the Funder/Sponsor: The funding source
had no role in the design and conduct of the study;
E8
Conclusions
As a first step in setting the research agenda of the NIH-ACS partnership, the inaugural 2015 NIH-ACS Summit on Surgical Disparities was
tasked with developing a pivotal research agenda to guide the future
of surgical disparities research. This goal was accomplished thanks to
interdisciplinary collaboration between surgeon-scientists, health disparities researchers, federal funding organizations, and policymakers. The findings of this summit will be used to inform funding priorities for key partners owing to a critical interinstitutional alliance among
the NIH, the ACS, the Patient-Centered Outcomes Research Institute, and the Agency for Healthcare Research and Quality.
The collaboration inspired by these institutions represents a call
for the development of further innovative partnerships to address surgical disparities. We challenge researchers and funding entities to take
these priorities to heart and begin moving research in the field of surgical disparities “from knowing to doing.” Within the context of the
larger literature, summit results also call for ongoing evaluation of evidence-based practice, rigorous research methodols, incentives for
standardization of care, and building on existing infrastructure to support these advances. With ongoing support and collaboration from
the NIH, ACS, and affiliates, best practices for implementation of identified research priorities can be achieved and be used to create more
optimal access to equitable quality care for all patients.
collection, management, analysis, and
interpretation of the data; preparation, review, or
approval of the manuscript; and decision to submit
the manuscript for publication.
Additional Contributions: We thank the
conference planning committee, keynote speakers,
participants, stakeholder panelists, federal
observers, and research support staff listed in the
eAppendix of the Supplement for their invaluable
contributions during the conference that led to the
preparation of this manuscript. We also thank the
National Institutes of Health and its staff for their
provision of meeting space and onsite resources
during the 2 day summit on Surgical Disparities
Research and The Center for Surgery and Public
Health in Boston and its staff including Tammy
Gilson-Ballard, MS and Emily Wilson, BA, for their
generous support in planning, conducting and
reporting this conference.
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