Engaging Stakeholders to Improve Care for Adults with Complex Health and Social Needs during a Public Health Emergency

Abstract

A public health emergency such as the COVID-19 pandemic exacerbates the already challenging environment facing adults with complex health and social needs (ACHSN) and the systems of care that support them. Between September 2020 and April 2021, 51 participants representing six different stakeholder groups were engaged using interviews, asynchronous Delphi surveys, and a virtual stakeholder meeting to learn from their perspectives about the greatest needs and possible solutions affecting ACHSN populations during the COVID-19 pandemic and to develop a prioritized research agenda to improve care for ACHSN populations. Mental health and financial concerns were strongly and consistently endorsed as the most important issues. Future research priorities identified included both macro systems research such as testing alternative state-level models of payment for physical and mental health care and research that could be conducted at a local level (such as identifying needs for patient care navigation services and testing models of care navigation).

In the U.S. health care system, high-need adults represent 37% of adults in the top 10% of health care spending, and 47% of those adults are in the top 5% of health care spending.¹ This population has been characterized with a variety of titles and segmentation definitions, including high-cost, high-needs patients (HCHN),^2,3 superutilizers,^4–6 and medically and socially complex patients (MSCP).^7,8 They are hereafter referred to as adults with complex health and social needs (ACHSN).⁹ ACHSN have average annual per-person health care expenditure of $21,000—three-fold higher than adults only characterized by multiple chronic diseases.¹⁰ Furthermore, ACHSN have needs extending beyond chronic conditions to include functional, social, and behavioral health.¹¹ As a result, ACHSN are more likely to depend on family or caregivers, social services, and community supports and visit hospitals more often, have more extended hospital stays, and have more emergency department (ED) visits than patients with less complex needs.^12,13 Health systems are using patient taxonomies, looking beyond physical conditions to include structural, social, and behavioral factors for identification of high-needs individuals to serve ACHSN populations more effectively.^11,13

Interventions to improve care while reducing inpatient and ED utilization with a focus on costs have been tested in trials across a variety of settings (e.g., ED, primary care, home, and community). Moderate to low-strength evidence related to reduced ED and inpatient utilization and costs has been noted across settings and various models of intervention. Low-touch interventions (e.g., telephonic and mail-based) and broad systems approaches have not demonstrated significant reductions in utilization or cost in clinical trials.^3,13

ACHSN likely require a range of coordinated services to optimize their quality of life (QoL) but often receive fragmented care in real-world settings. A multi-stakeholder exploration of the driving issues affecting this population prior to COVID-19 identified the most influential health issues affecting ACHSN as mental health issues, diabetes, and addiction. The most important barriers identified were patient agency, comorbidities, insurance, and cost of basic needs. The top-ranked potential solutions to improve care for ACHSN were integration of health services, improved mental health/behavioral support, improved coverage, logistical support, and cost of basic needs.¹⁴

A public health emergency such as the COVID-19 pandemic exacerbates the already challenging environment facing ACHSN populations and the systems of care that support them. Morbidity and mortality from COVID-19 infection are disproportionately severe for patients with existing medical co-morbidities. Disparities in COVID-19 severity and outcomes have been noted based on the presence of social determinates of health (SDOH) such as race/ethnicity, poverty, homelessness, housing insecurity, housing density, health care access, transportation patterns, food insecurity, and living in environments with smoke exposure or poor air quality.^15,16 In addition to effects of the virus itself, economic and social changes related to the pandemic have widened disparities and worsened SDOH for many.^17,18 Efforts to improve access to health care with telemedicine services may have widened gaps in access disparities for ACHSN.¹⁹

A comprehensive understanding of the barriers to providing good care and potential solutions to improve care requires incorporating the perspective of diverse stakeholders. We engaged patients and a diverse group of stakeholders involved in the care of ACHSN populations to understand the current and evolving priorities related to changes experienced during a public health emergency requiring social distancing. The specific aims of this paper are to describe an engagement process regarding the care of ACHSN populations and the resulting ranked priorities of the stakeholders involved.

Methods

Overview and sample

Between September 2020 and April 2021 our team built on previous and ongoing engagement with participants representing six different stakeholder groups (patients, health care team members, health system leaders, community-based organizations [CBOs], policymakers, and insurance company representatives) to learn from their perspectives about the greatest needs and possible solutions affecting ACHSN populations during a public health emergency such as the COVID-19 pandemic. Patient populations were recruited from past and current participants in the Care Connections program at Penn Medicine Lancaster General Health (PMLGH), a program designed to provide care specifically for ASCHN population. Our engagement work continued with our CBO (N=6), system leader (N=6), policymaker (N=5), and insurer partners (N=4) from our previous engagement efforts, but we expanded our health care team member partners to include a wider base of staffing (N=15) that encompassed nursing, social work, pharmacy, and chaplain representatives. The data collection process is summarized in Figure 1. The engagement methods were approved by the University of Pennsylvania's Institutional Review Board. A modest incentive ($25/participation event) was provided to patients for each round of engagement.

Data measures and management

Individual interviews

Individual interviews were conducted with representatives from each stakeholder group using guides developed

Figure 1.

Data collection process.

and piloted by clinicians, researchers, and patients on the engagement team. Participants were purposively recruited within stakeholder groups. Representatives for ACHSN were identified among a convenience sample of past and current Care Connections patients. Health system leaders and policymakers were identified among positions holding responsibilities related to resource allocation and program development. Representatives from CBOs were selected among agencies commonly referred to for services related to the care of ACHSN. In addition to identifying clinicians (both inpatient and ambulatory providers) from disciplines commonly referred to in the care of ACHSN and chaplain representatives, health care members were selected for managerial positions within their professions (nursing, social work, and pharmacy). By design, they would be able to speak from their own clinical perspectives in addition to their understanding of the experiences of the staff they oversaw. Participants were recruited by telephonic (ACHSN) and email outreach (all other stakeholder groups). Participants were asked questions tailored to elicit perspectives about perceived challenges, experience of social isolation, experience of financial stress, mental health, physical health, the use of telemedicine, and suggestions for improving care for identified challenges.

Data collection occurred by phone for interviews by staff with expertise in qualitative methods. Raw data included audio recorded interview narratives and the field notes of the engagement team. Audio files were sent to a professional transcription service experienced in formatting transcripts for analysis with qualitative software and compliance with rules related to confidentiality, de-identification, and Health Insurance Portability and Accountability Act of 1996 (HIPAA). Sanitized transcripts were entered into a qualitative software package (NVivo 12)²⁰ and subjected to an analytic scheme.

Delphi survey rounds 1 and 2

The initial Delphi survey presented stakeholders with the issues and solutions identified in interviews. Respondents were asked to rate the individual importance of each item from one to 10 (one being not important, 10 being most important). Stakeholders could provide comments about any items and describe their ratings in addition to any further comments about the engagement process.

The second round Delphi survey built upon the first with respondents given a bar graph illustrating the average rating of importance across all stakeholders for each Delphi 1 item. Respondents were asked to re-rate the importance and now also the difficulty of achieving each item. Lastly, stakeholders were given the opportunity for ongoing feedback through comments on the engagement process.

Stakeholder meetings

The stakeholder group meeting occurred on March 25, 2021. All 51 participants from six stakeholder groups were invited to a virtual meeting with the purpose of developing a shared understanding of the work to date; continuing the conversation around prioritizing pandemic-related challenges and suggested solutions that are most feasible and important; clarifying priorities for future research; and encouraging continued engagement as a workgroup. Prior to the meeting, all participants were provided a summary of the Delphi survey data. Separate meetings were arranged for patient/caregiver participants in order to proactively troubleshoot any technology issues associated with a virtual meeting; one was two days before the group stakeholder meeting, and the other was 30 minutes before the group stakeholder meeting.

After a brief introduction and reviewing the ground rules of the meeting, each stakeholder group was assigned to a breakout room for discussion. Participants were asked to confidentially provide a top three ranking of the identified pandemic-related problems and suggested solutions to their group's facilitator. Facilitators assigned a score of three to the top ranking, two to the second ranking, and one to the last ranking. Respondent scores were combined to determine a summative ranking for each stakeholder group.

Facilitators presented their group's ranking to all stakeholders after breakout sessions ended. Group scores were compiled to determine a cumulative ranking using only the top three ranked items from each group to minimize the influence of unequal stakeholder group sizes on the results. As before, items were assigned a score of three for the top ranking, two for second place ranking, and one for third place ranking. In the case of ties, a stakeholder group contributed all items from the lowest ranking level that resulted in that group contributing at least three items. The remainder of the meeting was spent discussing the final ranking and specific ideas/priorities for future research.

Delphi survey round 3

The third and final Delphi survey, conducted four weeks after the stakeholder meeting, was used to develop a final group prioritization of the issues discussed in earlier stages of the project and concrete next steps/future ideas. Respondents were given a bar graph showing the stakeholder meeting rankings of combined barriers and solutions with a brief description of each. The graph included a colorcoded breakdown of the relative contributions to the rankings from each stakeholder group. Respondents were asked to provide a final ranking of their top three choices from the list. Next, respondents were asked to rank their top three choices from a list of ideas for future research generated from the stakeholder meeting. To account for unequal numbers of representatives within stakeholder groups, final rankings were calculated by first summing ranking within each stakeholder group as done during the stakeholder meeting described above. Lastly, respondents were asked to provide any additional ideas for future research not included among the items generated during the stakeholder meeting.

Analyses

A constant comparative analysis^21,22 of interview data was used to develop themes and patterns related to the main issues facing ACHSN populations as well as potential solutions. Our interdisciplinary team met regularly to develop the coding schema. Individual team members coded early transcripts independently and identified topics that emerged from the data. Team meetings explored the early data line by line to reach consensus on emerging topics, address any identified discrepancies, collapse similar topics into broader categories, and define the preliminary codes to be used in the analysis. The preliminary codebook was refined and finalized through the same consensus process as new data emerged. About 20% of transcripts were double-coded for themes to ensure the reliability of coding, and discrepancies in coding were resolved by group consensus.

Delphi analyses include descriptions of the rates of importance and difficulty for identified problems and potential solutions.

Results

Interviews

In all, 51 individual interviews were conducted with representatives from each of the six stakeholder groups (15 patients, 6 CBOs, 6 health system leaders, 5 policymakers, 4 insurance representatives, and 15 health care workers). Interviews were

Table 1.

DESCRIPTION OF SAMPLE WITH NUMBER OF PARTICIPANTS BY STAKEHOLDER GROUP AND MODALITY OF ENGAGEMENT INTERACTION.

approximately 30 minutes in duration. Table 1 describes the number of participants by stakeholder group who participated in each round of the engagement process. Interviews identified 10 priority issues and 10 potential solutions reflected in the list below:

The top 10 pandemic-related challenges were:

• • Challenging emotions (feeling isolated, irritable)

• • Mental health (depression, anxiety)

• • Drug and/or alcohol use

• • Being physically active

• • Caring for their existing physical health conditions

• • Timely access to appropriate screening and testing to prevent future health issues

• • Transportation

• • Finances (keeping their jobs, paying bills being able to get enough food, housing)

• • Relationships (support from friends or family, managing conflict)

• • Lowering risk (avoiding exposure to or the spread of infection)

The top ten suggested solutions to pandemic challenges were:

• • Getting patients access to care where they live (someone from the health care team making a visit in the community)

• • Helping patients monitor their health where they live (blood pressure monitor, scale, oxygen monitors)

• • Getting testing for patients (COVID testing, labs for ongoing or new conditions)

• • Developing plans and being prepared for future emergencies/crises that are like the COVID-19 pandemic

• • Making public spaces safer to use (hand-washing stations, Plexiglas barriers, markers for social distancing)

• • Creating trusted, clear, and consistent messages about what we know and how to stay safe

• • Helping institutions change what they do and how they do their work to respond to new needs (hospitals opening community testing sites, businesses allowing work from home, restaurants converting to takeout)

• • Getting patients access to telehealth visits (medical visits on the phone or computer)

• • Ensuring access to essential supplies (masks, sanitizers/soap, toilet paper)

• • Developing ways to track the spread and current state of the problem that includes ways to respond to and reduce risk

Delphi rounds 1 and 2

A total of 30 stakeholders participated in the first round of the Delphi survey and 28 in the second. Figures 2 and 3 illustrate the average ratings by stakeholders of the importance and difficulty of the identified problems and potential solutions at the end of the second round of Delphi. Identified problems and solutions were consistently identified as important and all were rated to be at least moderately difficult to solve or implement. While noted to be the most difficult to address, finances and mental health issues stood out among the noted problems in terms of importance.

Stakeholder meeting

Of the 51 invited stakeholders, 24 agreed to participate in a virtual stakeholder meeting and 10 successfully attended the session. Participants

Figure 2.

Illustrates the average ratings by stakeholder group of the importance and difficulty of the identified problems noted in second round of Delphi.

Figure 3.

Illustrates the average ratings by stakeholder group of the importance and difficulty.

included one patient/caregiver, three health care providers, one CBO leader, two health care executives, and three policymakers. No stakeholders from the insurance representative stakeholder group were able to attend. Participants suggested and refined 17 ideas for future research during the stakeholder meeting (data available upon request).

Delphi survey round 3

A total of 24 stakeholders responded to the final Delphi survey. Participants were asked to rank the top three most important items from the list of 12 prioritized during the stakeholder meeting from the original 20 items. Figure 4 illustrates the final rankings by the stakeholder group of the identified problems and potential solutions. Participants identified mental health, finances, care where patients are, drug and/or alcohol use, and physical health care as the most important themes from earlier stages of the engagement process. Figure 5 illustrates the group prioritization of ideas for future research from the final Delphi survey round. Testing models of payment for integration of physical and mental health care, identifying patient care navigation needs, and testing models of care navigation services were the most strongly endorsed next steps. While variations existed between stakeholder groups in terms of the relative rankings of items, no clear patterns were identified in distinguishing groups.

Discussion

The described engagement process was used to generate priority rankings of pandemic-associated challenges and suggested solutions to better care for ACHSN populations; rated importance and feasibility of addressing pandemic-associated challenges and

Figure 4.

Illustrates the final ranking by stakeholder group of the identified problems and potential solutions in the third round of Delphi.

Figure 5.

Illustrates the final ranking by stakeholder group of the next steps for future research in the third round of Delphi.

suggested solutions; and prioritized future research questions to explore. The primary findings of the engagement process included mental health and financial concerns as the highest priority issues that must be addressed for ACHSN populations during public health crises requiring social distancing. The final top-ranked items included: 1) mental health, 2) finances, 3) care where patients are, 4) drug and/or alcohol use, and 5) physical health care. The top ranked next steps for future research included: 1) testing models of payment for integration of physical and mental health care, 2) identifying patient care navigation needs, and 3) testing models of care navigation services.

The rising number of Americans with complex health and social needs and the staggering associated economic impact on the U.S. health care system challenge researchers and practitioners to improve health care delivery for ACHSN populations. The identified priorities in this body of work align with and can further inform comparative effectiveness trials to advance our understanding of how to provide high-value care for ACHSN populations. The top-ranked issues consistently are included in profiles of medical and social complexity among ASCHN populations, as currently defined.^2,3,22 Mental health disorders have a strong association with high ED and inpatient utilization.^23,24 Although poverty/low income has been frequently included in ACHSN profiles, an extensive review of available literature found the association between poverty/low income and high health care utilization to be mixed in prior studies.³ Finances were strongly endorsed by our stakeholder participants as one of the most important issues affecting ACHSN during the pandemic. Drug and/or alcohol abuse, ranked 4^th in importance by our participants, has also been strongly associated with increased health care utilization for ACHSN.^25–27 The two remaining prioritized items, care where patients are and physical health care, are not terms consistently used in descriptions of ACHSN populations, but likely represent the experience of ACHSN patients during the pandemic as they confront two issues that are more typically part of the ACHSN profile, barriers to health care access^11,28 and multi-morbidity.^29–31

Review of scientific literature concerning the care of ACHSN also reveals alignment with the ranked next steps for future research prioritized by our stakeholder participants: 1) testing models of payment for integration of physical and mental health care;^32–34 2) identifying patient care navigation needs;^8,35–37 and 3) testing models of care navigation services.^38,39 The suggested next steps can be evaluated across previously studied settings (e.g., primary care, ED, home, ambulatory intensive care, community, systems, and telephonic/mail) to further advance our understanding of lowered ED and inpatient utilization and costs with the intention to improve clinical outcomes valued by ASCHN patients while improving job satisfaction among clinicians and care team members.³

Some limitations of our engagement process must be considered. Stakeholder perspectives and prioritization of different issues likely changed rapidly throughout the course of the engagement process due to the evolving nature of the pandemic. Final stakeholder rankings of the identified themes are representative of perspectives from spring 2021, and perspectives on prioritization would likely continue to evolve over time. There was likely also some temporal grounding of the discussion in themes identified early in the pandemic. As an example, issues surrounding vaccination against COVID-19 were a significant part of the stakeholder meeting discussion and likely influenced participants' perspectives about the different themes discussed at the end of the engagement process; vaccination was not an explicitly identified component of the named barriers or solutions because vaccines were not available or even certain to become available during the initial stages of this work.

We were not able to completely capture self-described race and ethnicity among engagement participants limiting our ability to describe the racial and ethnic distribution of participants. The engagement process was conducted in English creating barriers to non-English speaking participants. Future research should reduce barriers to non-English speaking stakeholders in order to better represent their perspectives.

Another limitation was thematic overlap between identified items. While efforts were made to clearly define summary terms and draw distinctions between similar themes as they were differentiated by stakeholders, association and overlapping interpretation of concepts such as "Getting patients access to telehealth visits" and "Getting patients access to care where they live" may have divided endorsement between items. In the final Delphi survey data visualization representing the stakeholder meeting ranking, votes for these two items were erroneously combined by the engagement team under the heading "Care where patients are." This presentation error could have potentially swayed final rankings in favor of "Care where patients are" and detracted from endorsement of telehealth. A final limitation noted by the study team relates to the strong dependence on technology for participation in some aspects of the engagement process, particularly the web-based surveys and virtual stakeholder meeting. While efforts were made to make these things more accessible to all participants (mail outreach, phone outreach to allow participants to complete the surveys orally, orientation sessions for the virtual meeting platform), the same barriers that many individuals experience engaging in telemedicine and health care in general could have been barriers to engaging in this project.

The unique circumstances of the COVID-19 pandemic and its potentially disproportionate impact on ACHSN populations present an opportunity to learn and improve systems of care for ACHSN populations, both in preparation for future emergencies and for ongoing population health promotion. Two key effects of the pandemic that can serve as a catalyst for improving care for ACHSN populations were: 1) the fact that stress and threats to personal or financial security were experienced across multiple segments of society in a way that can deepen understanding of the experiences and challenges commonly faced by ACHSN populations; and 2) the requirement of rapid changes to normal work and processes in health care and other institutions, disrupting legacy workflows and demonstrating the capacity to adapt to pressing needs, even when dramatic change was required.

The social isolation and financial strains experienced broadly during the pandemic created novel experiences of unavoidable loss of control, lack of resources, and lack of support for many people. While clearly the losses experienced are not represented to be equivalent in degree, prevalence, or severity across all segments of society, it is still significant that the pandemic caused some shared experience of stress and loss of control that can help provide a window for diverse stakeholder groups to better consider common life experiences of ACHSN populations. During the stakeholder meeting, our team noted conversation about the "leveling effect" of the pandemic in that all stakeholders seemed to resonate with challenges related to stress and financial uncertainty. Participants commented about the opportunity this presents to decrease stigma, increase compassion, and motivate resolve to address the needs of individuals who live with such challenges on an ongoing basis.

The pandemic also created a state of activation among nearly all groups and individuals by creating circumstances where they needed to make sweeping changes of personal response to pressing needs. With the pandemic emergency possibly receding at the time of this writing, we need to consider how to harness the activation energy and paradigm upheaval of the moment. Some changes in health care, such as the prevalence of telehealth services, will likely persist and be incorporated into future norms of health care delivery. Telehealth would likely have been an integral part of future health care delivery models without the recent crisis, but the pandemic accelerated change in this area dramatically in a way that is likely to have a lasting impact. As all stakeholders in the care of ACHSN populations have the shared experience of reimagining their paradigms and making rapid, sweeping changes in response to urgent needs, we can see more clearly now the possibility of shedding legacy models/assumptions about care delivery and designing new models of improved care together. The findings of this engagement process will help to prioritize next steps in comparative effectiveness research as institutions of care build out approaches to system navigation and resource allocation and policymakers continue to shape payment structures related to physical and mental health care for ACHSN populations.