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Article

Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda

1
Department of Community and Behavioral Health, College of Public Health, East Tennessee State University, Johnson City, TN 37614, USA
2
Department of Health Services Management and Policy, College of Public Health, East Tennessee State University, Johnson City, TN 37614, USA
3
Center for Cardiovascular Risk Research, East Tennessee State University, Johnson City, TN 37614, USA
4
Karing Hearts Cardiology, Johnson City, TN 37604, USA
5
Heritage College of Osteopathic Medicine, Ohio University, Athens, OH 45701, USA
6
Department of Pharmacy Practice, Bill Gatton College of Pharmacy, East Tennessee State University, Johnson City, TN 37614, USA
7
College of Nursing, East Tennessee State University, Johnson City, TN 37614, USA
8
College of Medicine, Health Science Center, University of Tennessee-Nashville, Nashville, TN 37203, USA
*
Author to whom correspondence should be addressed.
Int. J. Environ. Res. Public Health 2023, 20(9), 5660; https://doi.org/10.3390/ijerph20095660
Submission received: 14 March 2023 / Revised: 30 March 2023 / Accepted: 18 April 2023 / Published: 27 April 2023
(This article belongs to the Section Health Care Sciences & Services)

Abstract

:
The disproportionate burden of cardiovascular diseases (CVD) and associated risk factors continues to exist in the Central Appalachian Region (CAR) of the United States. Previous studies to gather data about patient-centered care for CVD in the region were conducted through focus group discussions. There have not been any studies that used a collaborative framework where patients, providers, and community stakeholders were engaged as panelists. The objective of this study was to identify patient-centered research priorities for CVD in the CAR. We used a modified Delphi approach to administer questionnaires to forty-two stakeholder experts in six states representing the CAR between the fall of 2018 and the summer of 2019. Their responses were analyzed for rankings and derived priorities by research gaps. Six of the fifteen research priorities identified were patient-centered. These patient-centered priorities included shorter wait times for appointments; educating patients at their level; empowering patients to take responsibility for their health; access to quality providers; heart disease specialists for rural areas; and lifestyle changes. The participants’ commitments to identify patient-centered research priorities indicate the potential to engage in community-based collaboration to address the burden of CVD in the CAR.

1. Introduction

It has been established that disparities in cardiovascular diseases (CVD) and risk factors exist across demographic and socioeconomic groups and geographic locations in the United States (U.S.) [1,2]. A key goal of Healthy People 2030 is to eliminate these disparities and achieve health equity, well-being, and health literacy [3]. Appalachian residents particularly suffer from the high burden of both diagnosed and undiagnosed CVD when compared to residents in non-Appalachian counties [4]. Additionally, studies have indicated that the burden of CVD in the Central Appalachian Region (CAR) is disproportionately greater than in non-CAR regions in the same state and national rates [4,5]. Research indicates that priorities need to be set for healthcare improvement and to develop targeted interventions [6] for patient-centered care. However, research involving CVD and risk factors in the CAR is sparse, providing rationales for this study.
Due to adverse historical experiences and sociocultural characteristics of the CAR [7,8], identifying priorities for CVD research requires engaging diverse community stakeholders [2]. Central Appalachia is a region associated with multiple challenges that are collectively linked to social determinants of health. Some of these problems include lower per capita incomes, higher poverty rates, lower educational attainment, and healthcare-related issues, such as reduced medical care access and a higher prevalence of chronic diseases [9]. The declining coal industry has further negatively impacted the region with problems in social and environmental conditions [9]. These regional problems result in health disparities associated with barriers to CVD management and optimal quality of life for patients with CVD in Appalachian communities [9,10,11].
The complexity of the aforementioned health disparities, both in the community and clinical settings, necessitates stakeholder engagement early on in developing research priorities, the implementation process, and later in the dissemination process to ensure the improved translation of research into practice [12]. As guided by PCORI’s conceptualization, our concept of stakeholders refers to providers, patients, clinicians, researchers, purchasers, payers, industry, policymakers, training institutions, hospitals, and health systems [13]. These individuals have a stake and direct interest in the health outcomes of the community being addressed [14]. Previous research, which utilized community-oriented approaches such as principles of community-based participatory research (CBPR), has helped shift the role of the patient in the research process from the subject of research to a stakeholder in research [12,14].
Community-based participatory research (CBPR) is an approach to research that utilizes community organizing principles and integrates community perspectives within every research phase [15]. The approach is used in studies aimed at setting research priorities in other regions of the U.S. It is helpful in linking research and practice, focusing on context for creating change [16].
The nine principles of CBPR include: (1) recognizing the community as a unit of identity; (2) building on strengths and resources within the community; (3) facilitating the collaborative, equitable involvement of all partners in all phases of the research; (4) integrating knowledge and action for the mutual benefit of all partners; (5) promoting a co-learning and empowering process that attends to social inequalities; (6) involving a cyclical and iterative process; (7) addressing health from both positive and ecological perspectives; (8) disseminating findings and knowledge gained to all partners; and (9) involving a long-term commitment by all partners [5].
Stakeholders have been involved in research that seeks to set priorities for healthcare improvement in low-resource and rural environments. A systematic review of priority setting studies conducted in the U.S. found that most stakeholders engaged in health research priority setting were patients, caregivers, and healthcare providers [17]. This type of collaboration highlights the much-needed place of patients as stakeholder experts and research partners having the opportunity to dialogue with other stakeholders [18,19,20].
The value of patient involvement in priority setting is clear because patients have the right to be involved in their healthcare. The equitable involvement of patients in research was recommended in a study conducted on priority setting in kidney disease to ensure that the relevant priorities identified in collaboration with patients were funded [21]. In a pilot study that engaged patients and community stakeholders, the researchers validated moving from an academic researcher-centric approach to one that embraced the knowledge and input of patients [21,22,23]. A study conducted in the U.S. for chronic childhood obesity to describe the priorities of stakeholders including patients, caregivers, and health professionals indicated that 24% of stakeholders were parents and caregivers, and 5% of them were children [24]. Thus, setting priorities for research involves collaboration across the stakeholder spectrum for health issues.
Stakeholders such as patients have played an active role as partners in developing research agendas [19]. Although studies have successfully gathered data on stakeholder preferences through consultative methods such as focus groups, this method lacks a collaborative framework for systematically engaging stakeholders for the purpose of capacity building. No studies have been conducted to set priorities for patient-centered CVD research in the CAR. Additionally, the patient experience of mistrust and skepticism of health professionals, and physician avoidance, have been identified in Appalachian communities [25]. These serve as the impetus for this study.
The purpose of this study was to engage patients, providers, and caregivers with knowledge of CVD in the CAR to identify patient-centered care research priorities for the region. With our research we seek to answer the following research questions:
What are the patient-centered care research priorities peculiar to the CAR?
What research priorities can we identify using the principles of CBPR?
The patient-centered model has been recommended and promoted for adoption in the public health field because evidence shows improved health outcomes when implemented [26]. Stakeholder experts, including informed and involved patients, receptive and responsive health professionals, and a collaborative, supportive healthcare environment fit well within the context of patient navigation and patient-clinician relationships where care is delivered [27]. Thus, this study filled a gap in the literature by providing an evidence-based process of engaging stakeholder experts using a modified Delphi method, in setting patient-centered research priorities for CVD in the CAR. The study is unique because it engaged patients from the affected communities across six states as stakeholder experts, and provided new insight into consensus on managing CVD patient populations [28].

2. Materials and Methods

2.1. Study Participants

Study participants comprised diverse CVD stakeholders involved in the 2018–2019 Patient-Centered Outcomes Research Institute (PCORI) engagement project.
Stakeholder experts for this project included patients, family/non-professional caregivers, public health professionals, and medical/healthcare providers chosen based on their expertise, membership in a community organization or patient advocacy group, and ability and willingness to participate in the PCORI priority setting project. These criteria resulted in a group of participants representing broad interests for the region.
All participants were provided with information that included the study purpose and contact details of the principal investigator and the project coordinator. In compliance with our Institutional Review Board (IRB) and Helsinki Declaration [22], study participants were notified that the study was voluntary and were informed of efforts in place to ensure confidentiality and privacy. Verbal consent to participate was obtained from each stakeholder.

2.2. Study Setting

The study was conducted in Central Appalachia, comprising 228 contiguous and 2 non-contiguous counties in six states: Kentucky, North Carolina, Ohio, Tennessee, Virginia, and West Virginia (Figure 1).

2.3. Study Approach

This study utilized grounded theory and principles of community-based participatory research (CBPR) as approaches to incorporate the strengths and resources of multiple stakeholders involved in addressing the health issue of CVD in the CAR. Out of the nine principles of CBPR, this study utilized four principles: building on strengths and resources within the community, ensuring a cyclical and iterative process, facilitating collaborative, equitable involvement of all partners in all phases of the research, and promoting a co-learning and empowering process that attends to social inequalities [15,17].

2.4. Study Design

We selected the Delphi method because it allows panelists to express their diverse perspectives on a subject matter in a structured and anonymous way [23]. It also allows for large geographical representation, which was important for covering all the counties in the CAR.
Ref. [24] The Delphi method encompasses four principles of CBPR: use of a cyclical and iterative process, building on the strengths and resources within the community, facilitating the collaborative and equitable involvement of all partners in all stages of the research, and promoting a co-learning and empowering process that attends to social inequalities. To establish consensus, we administered surveys to address the following research questions:
What are the patient-centered care research priorities peculiar to the CAR?
What research priorities can we identify using the principles of CBPR?
Stakeholder experts were invited to participate on the Delphi panel via email. Data were collected through open-ended questions, as well as priority rankings. We aimed to use the qualitative data gathered from stakeholders to effectively achieve consensus in establishing priority research areas in the CAR (Table 1).

2.5. Data Collection and Analysis

Data were collected between October 2018 and July 2019 through the electronic administration of questionnaires by e-mail to stakeholders in all six states represented by the CAR (Figure 1). The questionnaires were developed from data derived from the environmental scan, focus groups, and CVD disparity statistics for the Central Appalachian communities. The first step was conducting round 1 in an unstructured format to effectively develop a list of stakeholder priorities. Panelists were presented with an open-ended question and asked to provide their top five priorities for CVD in their community and then rank them; 1 was considered the top priority, and 5 was considered the least. Thematic analysis was used to analyze the collected data. The qualitative data were entered into Nvivo, a qualitative data management software in which the grounded theory approach was used to identify themes that support the priorities and rankings.
The second step was a round of data collection conducted by means of a questionnaire. The questionnaire, which had 15 closed-ended questions, was developed using Google forms, with the content of the questionnaire derived from round one responses. The panelists were asked to rank priority items for their respective communities. A total of 42 respondents participated in round 2 (14 patients/non-licensed caregivers, 15 community stakeholders, and 13 providers). The response rate was 52%.
CVD factors identified for priority ranking covered factors such as nutrition, physical activity, education, rural community outreach, health care access, quality of care, patient-provider communication, cost of medication, focus on preventive medicine, and tobacco use (Table 1). Panelists were asked to identify themselves as either patients, non-licensed caregivers, community stakeholders, or providers/professionals. The panelists were asked to choose their top three to four priorities from the respective questions for a total of 24 priorities each. During the response period, e-mail reminders were sent to panelists every two weeks. Data were analyzed using descriptive statistics in Microsoft Excel and presented as percentages with illustrations in bar graph format. The top 24 priorities established in round two were concretized and used to develop the questionnaire for round 3.
The third step was round 3, which was the final round. A paper-based questionnaire was administered at the annual CVD Appalachia Conference in August 2019. The top priorities generated in round 2 were presented to conference stakeholders to prioritize. Each closed-ended question asked for a priority ranking, with only one priority being selected from each question. Of 40 stakeholder experts who agreed to complete the questionnaire, 31 submitted their responses (7 patients, 18 providers, and 6 community stakeholders). The response rate for round 3 was 77.5%. The modified Delphi method allows for questionnaire administration in a forum where participants are physically present [2]. Data were analyzed using mixed methods of thematic analysis (Nvivo) and quantitative analysis with descriptive statistics for the rankings.

3. Results and Outcomes

CVD Patient-Centered Research Priorities

Fifteen priority items for CVD care in the CAR were identified by forty-two stakeholder experts (Table 2).
The modified Delphi outcome summary for each round, is shown in Table 3.
Six of the fifteen priority items were patient-centered, and mapped to two specific areas: (1) patient-centered care; and (2) managing CVD in patient populations (Table 4).
The consensus response rate was 77.5%. The most highly ranked priorities were divided into the following categories: overall access to quality healthcare, patient-provider communication, lifestyle modifying techniques, strategies for preventing heart disease, and medication affordability.

4. Discussion

To our knowledge, no other studies on setting priorities for a CVD research agenda in the CAR have been found. This gap in the literature about prioritizing research in Appalachia highlights the relevance of this study. Disparities exist in CVD risks and outcomes in the U.S., and several barriers to managing CVD have been associated with living in the Appalachian region [4,27]. Moreover, individuals experiencing the greatest burden of CVD may not accept or understand the need for lifestyle changes and may not have access to medical care. The combination of acceptance and understanding requires a comprehensive approach to patient-centered care originating from stakeholder engagement. [29]. Previous studies discuss various approaches to patient-centered care, such as patient-provider communication focusing on community health worker interventions [9,30,31]. However, no studies documenting stakeholder priority setting for the CVD research agenda were found in the CAR. The results of this study converge with literature that calls for a patient-centered approach to health promotion and the reduction of health inequalities and disparities, especially in rural populations [32].
In an environment of mistrust for medical providers, the patient-centered care approach provides an atmosphere to build trust between patients and providers [19]. Patient reflections on patient-centered care indicate that trust remains an important part of patient-provider relationships [19,29,30]. While trust may be defined in numerous ways, there is consensus in the literature that it entails believing that providers have the patient’s best interest and will act in goodwill [31]. The trust deficit results in barriers to relationships with providers and impending patient adherence to medical recommendations and their utilization of preventive health services [25,33,34]. A study in Appalachia found that distrust in the healthcare system influences patients against taking preventive health measures [35].
The results of this study illustrate the broad range of opportunities for patient-centered, evidence-based interventions. The unique contribution of our study stems from addressing the gap in the literature. Our results confirm and enhance the patient-centered care and CVD literature by demonstrating that setting priorities for patient-centered care within disease-specific populations across large geographic areas is desired and feasible [17,31,35].
This study also (1) confirms that engaging patients and community members in rural and underserved areas as stakeholders for consensus in the research process is achievable; and (2) provides a deeper understanding of patient perspectives of how CVD populations are managed in local communities [36]. This study implies an increasing expectation from stakeholders to recognize the “patient as a person” rather than seeing the person as a patient. To see the “patient as a person”, emphasis must be on delivering patient-driven proactive and personalized care, and also understanding the patient and their illness in the context of the individual [37,38]. Emerging literature has recommended a patient-centered care approach for patients with chronic diseases with the context of the whole person taken into consideration [37]. To further exemplify the “patient as a person” in priority setting acknowledges the patient as a key stakeholder in the process, which may impact research outcomes [39]. With this approach, the patient is not only a recipient of treatment and services, but is also an expert engaged in identifying priorities for their care in their community.
The strengths of this study are the participation of a highly diverse group of stakeholder experts who represented Appalachian counties in six states, the CAR. Utilizing principles of CBPR, patients and family caregivers participated in the study by means of an existing method of priority setting, the modified Delphi method. This strategy supports the engagement of those receiving care to take an active role in their health care by becoming researchers and not merely recipients of care. Stakeholder experts were found to be highly motivated to participate in identifying health disparities in the CAR. The consensus reached after round 3 indicates that providers should come alongside patients to ensure that their needs are met, and contribute to the planning of the disease management process.

Limitations

One of the study’s limitations is that the panelists did not receive compensation for their time participating in the study. Logistical limitations also included a limited timeframe to complete the Delphi process. Both these factors may explain the low response rate in round 1. Nonetheless, the themes across these three data collection rounds were consistent.

5. Conclusions

This study aimed to fill a gap in priority setting for a CVD research agenda in the CAR. Our results suggest that the modified Delphi method successfully engaged stakeholders as experts in identifying research priorities for the region, which is rural and under-resourced. The priorities included the patient’s voice and perspective, which were identified through an iterative process based on CBPR principles. Six patient-centered priorities included research that supports: (1) access to quality healthcare providers; (2) communicating and providing education to patients on their level; (5) shorter wait times for scheduling appointments; and (6) empowering and motivating patients to take responsibility for their health. Thus, this study provides a platform for future studies to facilitate patient-centered care and patient-centered outcomes research.

Author Contributions

Conceptualization, H.M.M., M.A.L., A.M.P., D.D. and D.W.S.; Data curation, D.N., F.O., M.A.L., A.M.P. and C.B.; Formal analysis, D.N., F.O. and M.A.L.; Funding acquisition, H.M.M.; Investigation, H.M.M., M.A.L. and T.K.P.; Methodology, D.N., H.M.M. and M.A.L.; Project administration, H.M.M. and A.M.P.; Resources, A.M.P., C.B. and R.G.; Software, H.M.M.; Supervision, H.M.M. and M.A.L.; Validation, H.M.M., M.A.L., D.D., D.W.S., F.M.W., E.K.F. and H.W.; Writing—original draft, D.N., F.O. and H.M.M.; Writing—review & editing, D.N., F.O., H.M.M., M.A.L., A.M.P., C.B., C.V., R.G., D.D., D.W.S., F.M.W., T.K.P., E.K.F. and H.W. All authors have read and agreed to the published version of the manuscript.

Funding

This research was funded by the Patient-Centered Outcomes Research Institute (PCORI) (EAIN# 4411).

Institutional Review Board Statement

The study was conducted according to the guidelines of the Declaration of Helsinki and approved by the Institutional Review Board of East Tennessee State University (approval code: IRB # 0118.26sd).

Informed Consent Statement

Informed consent was obtained from all subjects (participants) involved in the study.

Data Availability Statement

Not applicable.

Acknowledgments

We would like to express our gratitude to all the stakeholders who dedicated their time to be part of the Delphi Panel.

Conflicts of Interest

The authors declare no conflict of interest.

Abbreviations

CAR Central Appalachian Region

References

  1. Benjamin, E.J.; Muntner, P.; Alonso, A.; Bittencourt, M.S.; Callaway, C.W.; Carson, A.P.; Chamberlain, A.M.; Chang, A.R.; Cheng, S.; Das, S.R.; et al. Heart Disease and Stroke Statistics-2019 Update: A Report From the American Heart Association. Circulation 2019, 139, e56–e528. [Google Scholar] [CrossRef] [PubMed]
  2. O’Neill, B.; Aversa, V.; Rouleau, K.; Lazare, K.; Sullivan, F.; Persaud, N. Identifying top 10 primary care research priorities from international stakeholders using a modified Delphi method. PLoS ONE 2018, 13, e0206096. [Google Scholar] [CrossRef]
  3. Farber, E.W.; Ali, M.K.; Van Sickle, K.S.; Kaslow, N.J. Psychology in patient-centered medical homes: Reducing health disparities and promoting health equity. Am. Psychol. 2017, 72, 28–41. [Google Scholar] [CrossRef]
  4. Mudd-Martin, G.; Biddle, M.J.; Chung, M.L.; Lennie, T.A.; Bailey, A.L.; Casey, B.R.; Novak, M.J.; Moser, D.K. Rural Appalachian Perspectives on Heart Health: Social Ecological Contexts. Am. J. Heal. Behav. 2014, 38, 134–143. [Google Scholar] [CrossRef] [PubMed]
  5. Mamudu, H.M.; Wang, L.; Veeranki, S.P.; Panchal, H.B.; Alamian, A.; Paul, T.K.; Budoff, M. Association Between Multiple Modifiable Risk Factors of Cardiovascular Disease and Hypertension among Asymptomatic Patients in Central Appalachia. South. Med. J. 2017, 110, 90–96. [Google Scholar] [CrossRef] [PubMed]
  6. Welfare, M.R.; Colligan, J.; Molyneux, S.; Pearson, P.; Barton, J.R. The identification of topics for research that are important to people with ulcerative colitis. Eur. J. Gastroenterol. Hepatol. 2006, 18, 939–944. [Google Scholar] [CrossRef] [PubMed]
  7. Lewin, P.G. “Coal is Not Just a Job, It’s a Way of Life”: The Cultural Politics of Coal Production in Central Appalachia. Soc. Probl. 2019, 66, 51–68. [Google Scholar] [CrossRef]
  8. Schept, J.; Mazurek, J.E. Layers of Violence: Coal Mining, Convict Leasing, and Carceral Tourism in Central Appalachia. Palgrave Handb. Prison. Tour. 2017, 171–190. [Google Scholar]
  9. Danzl, M.M.; Harrison, A.; Hunter, E.G.; Kuperstein, J.; Sylvia, V.; Maddy, K.; Campbell, S. “A Lot of Things Passed Me by”: Rural Stroke Survivors’ and Caregivers’ Experience of Receiving Education From Health Care Providers. J. Rural. Health 2016, 32, 13–24. [Google Scholar] [CrossRef]
  10. Mamudu, H.M.; Jones, A.; Paul, T.; Subedi, P.; Wang, L.; Alamian, A.; Alamin, A.E.; Blackwell, G.; Budoff, M. Geographic and Individual Correlates of Subclinical Atherosclerosis in an Asymptomatic Rural Appalachian Population. Am. J. Med. Sci. 2018, 355, 140–148. [Google Scholar] [CrossRef]
  11. Pollard, K.; Jacobsen, L.A. The Appalachian Region: A Data Overview from the 2011–2015 American Community Survey—Appalachian Regional Commission. Popul. Ref. Bur. Appalach. Reg. Comm. 2017, 70. [Google Scholar]
  12. Kwon, S.C.; Tandon, S.D.; Islam, N.; Riley, L.; Trinh-Shevrin, C. Applying a community-based participatory research framework to patient and family engagement in the development of patient-centered outcomes research and practice. Transl. Behav. Med. 2018, 8, 683–691. [Google Scholar] [CrossRef]
  13. PCORI. 2018. Available online: https://www.pcori.org/about-us/our-programs/engagement/public-and-patient-engagement/pcoris-stakeholders#:~:text=A%20broad%20range%20of%20communities,treating%20those%20with%20a%20condition (accessed on 23 December 2022).
  14. Crumby, A.S.; Holmes, E.R.; Rosenthal, M. Patient centered research to improve community involvement (PaRTICIpate) in diabetes self-management: A conference series for developing collaborations between researchers, stakeholders, and patients. J. Patient-Rep. Outcomes 2018, 2, 47. [Google Scholar] [CrossRef] [PubMed]
  15. Wallerstein, N.; Duran, B. Community-Based Participatory Research Contributions to Intervention Research: The Intersection of Science and Practice to Improve Health Equity. Am. J. Public Health 2010, 100 (Suppl. S1), S40–S46. [Google Scholar] [CrossRef]
  16. Sawford, K.; Dhand, N.K.; Toribio, J.-A.L.; Taylor, M.R. The use of a modified Delphi approach to engage stakeholders in zoonotic disease research priority setting. BMC Public Health 2014, 14, 182. [Google Scholar] [CrossRef]
  17. Israel, B.A.; Schulz, A.J.; Parker, E.A.; Becker, A.B. Community-based participatory research: Policy recommendations for promoting a partnership approach in health research. Educ. Health 2001, 14, 182–197. [Google Scholar]
  18. Khan, N.; Bacon, S.L.; Khan, S.; Perlmutter, S.; Gerlinsky, C.; Dermer, M.; Johnson, L.; Alves, F.; McLean, D.; Laupacis, A.; et al. Hypertension management research priorities from patients, caregivers, and healthcare providers: A report from the Hypertension Canada Priority Setting Partnership Group. J. Clin. Hypertens. 2017, 19, 1063–1069. [Google Scholar] [CrossRef]
  19. Abma, T.A.; Pittens, C.A.C.M.; Visse, M.; Elberse, J.E.; Broerse, J.E.W. Patient involvement in research programming and implementation: A responsive evaluation of the Dialogue Model for research agenda setting Patient involvement in research programming and implementation: A responsive evaluation of the Dialogue Model for res. Health Expect. 2015, 18, 2449–2464. [Google Scholar] [CrossRef]
  20. Pittens, C.A.C.M.; Elberse, J.E.; Visse, M.; Abma, T.A.; Broerse, J.E.W. Research agendas involving patients: Factors that facilitate or impede translation of patients’ perspectives in programming and implementation. Sci. Public Policy 2014, 41, 809–820. [Google Scholar] [CrossRef]
  21. Schölvinck, A.-F.M.; Pittens, C.A.C.M.; Broerse, J.E.W. Patient involvement in agenda-setting processes in health research policy: A boundary work perspective. Sci. Public Policy 2020, 47, 246–255. [Google Scholar] [CrossRef]
  22. Tai-Seale, M.; Sullivan, G.; Cheney, A.; Thomas, K.; Frosch, D. The Language of Engagement: “Aha!” Moments from Engaging Patients and Community Partners in Two Pilot Projects of the Patient-Centered Outcomes Research Institute. Perm. J. 2016, 20, 89–92. [Google Scholar] [CrossRef]
  23. Tong, A.; Chando, S.; Crowe, S.; Manns, B.; Winkelmayer, W.C.; Hemmelgarn, B.; Craig, J.C. Research Priority Setting in Kidney Disease: A Systematic Review. Am. J. Kidney Dis. 2015, 65, 674–683. [Google Scholar] [CrossRef]
  24. Odgers, H.L.; Tong, A.; Lopez-Vargas, P.; Davidson, A.; Jaffe, A.; McKenzie, A.; Pinkerton, R.; Wake, M.; Richmond, P.; Crowe, S.; et al. Research priority setting in childhood chronic disease: A systematic review. Arch. Dis. Child. 2018, 103, 942–951. [Google Scholar] [CrossRef] [PubMed]
  25. Hong, H.; Oh, H.J. The Effects of Patient-Centered Communication: Exploring the Mediating Role of Trust in Healthcare Providers. Health Commun. 2019, 35, 502–511. [Google Scholar] [CrossRef]
  26. Haley, B.; Heo, S.; Wright, P.; Barone, C.; Rettiganti, M.R.; Anders, M. Relationships among active listening, self-awareness, empathy, and patient-centered care in associate and baccalaureate degree nursing students. NursingPlus Open 2017, 3, 11–16. [Google Scholar] [CrossRef]
  27. Epstein, R.M.; Fiscella, K.; Lesser, C.S.; Strange, K.C. Why the Nation needs a policy push on patient-centred care. Health Aff. 2010, 29, 1489–1495. [Google Scholar] [CrossRef] [PubMed]
  28. Grady, C. Ethical Principles in Clinical Research. In Principles and Practice of Clinical Research; Elsevier Inc.: Amsterdam, The Netherlands, 2012; pp. 19–30. [Google Scholar]
  29. Constand, M.K.; MacDermid, J.C.; Dal Bello-Haas, V.; Law, M. Scoping review of patient-centered care approaches in healthcare. BMC Health Serv. Res. 2014, 14, 271. [Google Scholar] [CrossRef]
  30. Mensah, G.A.; Cooper, R.S.; Siega-Riz, A.M.; Cooper, L.A.; Smith, J.D.; Hendricks Brown, C.; Westfal, J.M.; Ofili, E.O.; Price, L.N.; Arteaga, S.; et al. Reducing cardiovascular disparities through community-engaged implementation research: A national heart, lung, and blood institute workshop report. Circ. Res. 2018, 122, 213–230. [Google Scholar] [CrossRef] [PubMed]
  31. Bokhour, B.G.; Fix, G.M.; Mueller, N.M.; Barker, A.M.; LaVela, S.L.; Hill, J.N.; Solomon, J.L.; Lukas, C.V. How can healthcare organizations implement patient-centered care? Examining a large-scale cultural transformation. BMC Health Serv. Res. 2018, 18, 168. [Google Scholar] [CrossRef]
  32. Zimmerman, E.B.; Cook, S.K.; Haley, A.D.; Woolf, S.H.; Price, S.K. A Patient and Provider Research Agenda on Diabetes and Hypertension Management. Am. J. Prev. Med. 2017, 53, 123–129. [Google Scholar] [CrossRef]
  33. Becker, K.L. Tell me your dreams and goals: Structuring communication exchanges to improve patient-centered care with chronic pain patients. Appl. Nurs. Res. 2020, 53, 151248. [Google Scholar] [CrossRef] [PubMed]
  34. Behringer, B.; Friedell, G.H. Appalachia: Where place matters in health. Prev. Chronic Dis. 2006, 3, A113. [Google Scholar] [PubMed]
  35. Cheng, P.; Roberts, L.; Nogaj, L.; Deprele, D.S.; Inrig, S. Comparing Two Worlds: The Impact of Trust on Preventative Medicine in Marginalized Populations in the US Appalachia and Peruvian Andes. South Calif. Conf. Undergrad. Res. 2017. [Google Scholar]
  36. Lindson, N.; Richards-Doran, D.; Heath, L.; Hartmann-Boyce, J. Setting research priorities in tobacco control: A stakeholder engagement project. Addiction 2017, 112, 2257–2271. [Google Scholar] [CrossRef]
  37. Global Burden of Cardiovascular Diseases Collaboration; Roth, G.A.; Johnson, C.O.; Abate, K.H.; Abd-Allah, F.; Ahmed, M.; Alam, K.; Alam, T.; Alvis-Guzmán, N.; Ansari, H.; et al. The Burden of Cardiovascular Diseases Among US States, 1990–2016. JAMA Cardiol. 2018, 3, 375–389. [Google Scholar] [PubMed]
  38. Poitras, M.-E.; Maltais, M.-E.; Bestard-Denommé, L.; Stewart, M.; Fortin, M. What are the effective elements in patient-centered and multimorbidity care? A scoping review. BMC Health Serv. Res. 2018, 18, 446. [Google Scholar] [CrossRef]
  39. Carroll, S.L.; Embuldeniya, G.; Abelson, J.; McGillion, M.; Berkesse, A.; Healey, J.S. Questioning patient engagement: Research scientists’ perceptions of the challenges of patient engagement in a cardiovascular research network. Patient Prefer. Adherence 2017, 11, 1573–1583. [Google Scholar] [CrossRef]
Figure 1. Priority setting study area—Central Appalachia (Source: Appalachian Regional Commission; ARC).
Figure 1. Priority setting study area—Central Appalachia (Source: Appalachian Regional Commission; ARC).
Ijerph 20 05660 g001
Table 1. Modified Delphi Methodology Summary.
Table 1. Modified Delphi Methodology Summary.
Round Number and Activity/GoalMethodology/Process
Round 1.
Stakeholder experts vote for top five priorities
Participants were asked to compile and rank their top five priorities for cardiovascular disease, based on their expertise or experience. Thematic analysis was used to analyze the collected data. The response rate was 14%.
Round 2.
Ranking of Priorities found within qualitative data
Using a 15-question instrument, experts were asked to select a specific number of their top research priorities based on the following categories: (1) Patient-centered care; (2) CVD risk factors; (3) Psychosocial determinants of CVD; (4) Social determinants of CVD. A total of 42/80 experts responded to Round II questionnaire (14 patients/non-licensed caregivers, 15 community stakeholders, and 13 professional/providers)
The response rate was 52%.
Further narrowing of prioritiesRound II data analyzed. Data were analyzed using descriptive statistics in MS Excel and presented as percentages with illustrations in bar graph format
Round 3.
CVD Sharing Session at CVD Appalachia Conference II and Delphi Round III. Discussion and validation
Participants gathered at a conference to determine what priorities would move forward to make up the final research agenda. A paper-based survey was administered. Each closed-ended question asked for a priority ranking, with only one priority being selected from each question. Thirty-one out of forty stakeholders (7 patients, 18 providers, and 6 community stakeholders) submitted their responses. The response rate was 77.5%.
Alignment of research agenda with PCORI initiativesFifteen priorities mapped to major areas. Six of the 15 priorities were patient-centered
Table 2. Characteristics of Stakeholder Experts for the Modified Delphi Panel.
Table 2. Characteristics of Stakeholder Experts for the Modified Delphi Panel.
CharacteristicsRound 1 n (%)Round 2 n (%)Round 3 n (%)
State
Kentucky0 (0)3 (7)0 (0)
North Carolina0 (0)2 (5)2 (6)
Ohio1 (10)5 (12)3 (10)
Tennessee6 (54)22 (52)15 (48)
Virginia1 (10)7 (17)6 (19)
West Virginia3 (27)3 (7)5 (17)
Stakeholder Type
Patient/Non-licensed caregiver7 (64)14 (33)7 (23)
Provider/Professional2 (18)13 (31)18 (58)
Community stakeholder2 (18)15 (36)6 (19)
Demographic
Sex
Male2 (18)13 (31)14 (45)
Female9 (82)29 (69)17 (72)
Table 3. Modified Delphi Outcome Consensus.
Table 3. Modified Delphi Outcome Consensus.
Round Number and GoalOutcomes
Round 1.
Stakeholder experts vote for top five priorities
Fifty-five priorities were obtained from 11 experts. The priorities were then grouped into 7 major focus areas. The top five priorities generated: (1) nutrition education and best practices; (2) education for heart disease prevention; (3) increased opportunities for free and no-cost exercise and physical activities; (4) reducing cost of healthcare for heart disease; and (5) treatment of heart disease and stroke
Round 2.
Ranking of priorities found within qualitative data
A parsimonious set of priorities was selected by 42 experts from each category. Data ready for analysis to determine the research agenda twenty-four (24) items identified.
Round 3.
CVD Sharing Session at CVD Appalachia Conference II and Delphi Round III. Discussion and validation
Further input from 31 experts to determine final priorities. Refined list derived. Fifteen (15) items were identified; six of the 15 priorities were patient-centered as shown in Table 2
Alignment of research agenda with PCORI initiativesResearch agenda established by a consensus of Central Appalachia community stakeholders
Table 4. Priorities Identified at Each Round.
Table 4. Priorities Identified at Each Round.
Priority AreasRound 1Round 2Round 3
(1) Patient-centered careEducation
Lifestyle
More time with healthcare providers
Better communication between providers and patients
Shorter wait times for scheduling appointments
Communicate and provide education to patients on their level
Communicate and provide education to patients on their level
Shorter wait times for scheduling appointments
Empower and motivate patients to take responsibility for their health and illnesses
(2) CVD risk factorsNutritionPrevention of heart disease education
Knowledge and education about the prevention of heart disease
and risk factors
Knowledge and skills in preparation of heart-healthy foods
Knowledge and skills in reducing intake of sodium
Knowledge and skills to prevent tobacco use
Regular screenings for blood pressure, glucose and
cardiac calcium
Knowledge and education about the prevention of heart disease and risk factors
Prevention of heart disease education and skills on prevention of risk factors
(3) Psychosocial determinants of healthPreventionKnowledge and skills on how to reduce and manage stress
Skills to prevent nicotine addiction
Knowledge and skills on how to reduce and manage stress
Skills to prevent nicotine addiction
(4) Social determinants of healthPhysical Activity
Nutrition
Access to affordable healthy food
Access to care for heart disease
Increase availability of no-cost walking options and exercise places in the community
Lower costs for uninsured
Knowledge and education about physical activities for all ages
(5) CVD policies and programsLifestyle
Education
Cost
Programs that target high-risk and low-socioeconomic populations to promote healthy lifestyles
Affordable public transportation to access healthy lifestyle programs and sites
Programs that target high-risk and low-socioeconomic populations to promote healthy lifestyles
School budgets to promote physical education, nutrition, and health education
(6) Medication adherenceCost
Education
Better information and explanation of medications
Affordable medications
Affordable medications
(7) Managing CVD patient populationEducation
Lifestyle
Prevention
Screening
Healthcare providers to conduct community outreach and/or outreach practices
Availability of mobile units to screen and treat heart disease
Heart disease specialists in rural areas
Empower/motivate patients to take responsibility for illness/health
Access to quality healthcare providers
Heart disease specialists in rural areas
More information on lifestyle changes versus relying solely on medications
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Nyarambi, D.; Osedeme, F.; Mamudu, H.M.; Littleton, M.A.; Poole, A.M.; Blair, C.; Voigt, C.; Gregory, R.; Drozek, D.; Stewart, D.W.; et al. Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda. Int. J. Environ. Res. Public Health 2023, 20, 5660. https://doi.org/10.3390/ijerph20095660

AMA Style

Nyarambi D, Osedeme F, Mamudu HM, Littleton MA, Poole AM, Blair C, Voigt C, Gregory R, Drozek D, Stewart DW, et al. Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda. International Journal of Environmental Research and Public Health. 2023; 20(9):5660. https://doi.org/10.3390/ijerph20095660

Chicago/Turabian Style

Nyarambi, Dumisa, Fenose Osedeme, Hadii M. Mamudu, Mary A. Littleton, Amy M. Poole, Cynthia Blair, Carl Voigt, Rob Gregory, David Drozek, David W. Stewart, and et al. 2023. "Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda" International Journal of Environmental Research and Public Health 20, no. 9: 5660. https://doi.org/10.3390/ijerph20095660

APA Style

Nyarambi, D., Osedeme, F., Mamudu, H. M., Littleton, M. A., Poole, A. M., Blair, C., Voigt, C., Gregory, R., Drozek, D., Stewart, D. W., Weierbach, F. M., Paul, T. K., Flores, E. K., & Wei, H. (2023). Setting Patient-Centered Priorities for Cardiovascular Disease in Central Appalachia: Engaging Stakeholder Experts to Develop a Research Agenda. International Journal of Environmental Research and Public Health, 20(9), 5660. https://doi.org/10.3390/ijerph20095660

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