Table 1.
Stakeholder groups engaged in the Comprehensive Post-Acute Stroke Services (COMPASS) Study
| Stakeholder groups | Rationale for inclusion |
|---|---|
| Patients | |
| Diversity in race, sex, SES, age, rural/urban | The most knowledgeable about how usual care is failing them during recovery from stroke. Given the profound inequalities in stroke outcomes, we are intentionally promoting health equity by including the voices of female, African-American, and rural North Carolinians |
| Family caregivers | |
| Diversity in race, sex, SES, age, rural/urban | Caregiver support is one of the most important factors in a stroke patient’s recovery. They are the most knowledgeable about how usual care is failing patients and their caregivers |
| Clinicians | |
| Primary care (rural/urban) | They are caring for patients after discharge and without them we cannot move population health on stroke forward |
| Pharmacy (rural/urban) | Patients, neurologists, and primary care physicians all identified medication management as a modifiable risk factor |
| Home health agencies (rural/urban) | Bayada Home Health, Gentiva, and Kindred are the state’s leading purveyors of skilled nursing services and home-based therapies (eg, physical therapy, occupational therapy, speech therapy) for improving health, regaining independence, and becoming self-sufficient as patients transition back home and into their communities after major illness or injury |
| Outpatient physical, occupational, and speech therapy | They are essential for carrying out the care plan for recovery for stroke patients. They also have the most face-to-face time with stroke patients and can provide reinforcement of the key messages of COMPASS |
| Hospital stroke team (rural/urban) Neurologists Stroke nurse practitioners Nurses Stroke care coordinators Therapists (physical, occupational, speech) | The multidisciplinary members of the hospital stroke team are essential for identifying eligible stroke patients and developing the discharge care plans for these patients. Although the majority of the intervention occurs in the post-discharge setting, case ascertainment and the initiation of the intervention begins before discharge. These stakeholders also need to be aware of the information given to patients on behalf of the study |
| Community-based services | |
| Piedmont Triad Regional Council Area Agency on Aging (PTRC AAA) | The AAA network manages the allocation of federal and state funding to the community-based services that stroke patients and their caregivers need—but often cannot quickly access—in recovery (eg, transportation services, home modifications, caregiver support). By partnering closely with the PTRC AAA we gained access to all AAAs in NC |
| CareNet Counseling | Network of community-based spiritually integrated counseling providers across the state. Depression is common after stroke but undertreated, often because mental health services are difficult to access in rural NC. This is an alternative source for behavioral health support services that are critical to chronic care management of stroke |
| FaithHealthNC | FaithHealthNC is a partnership between congregations and health systems in NC. FaithHealthNC staff train volunteers from congregations and the community to offer health-care ministries to anyone in their community who is in need. They provide support before, during, and after hospitalization (eg, make home visits, provide emotional and spiritual support, and help with meals, transportation, medications, and other needs). This network of congregations can provide some of the services the NCAAA and NCDHHS cannot due to restricted funding |
| Hospitals and health systems | |
| Clinical informatics experts | IT stakeholders are needed to be aware of the minimum IT requirements for COMPASS to function properly in the clinic. These stakeholders will be essential for ensuring that wireless technology is available to use the electronic care plan website, both on PC or laptop, and on the iPad. Also, these connections need to be firewall protected |
| Quality and systems improvement experts | COMPASS is based on the use of quality improvement methods to ensure the workflow and processes are constantly being evaluated and improved upon. The quality departments and leaders are needed to ensure COMPASS is included in the list of quality initiatives for that hospital |
| NC Stroke Care Collaborative network of hospitals | An existing network of hospitals dedicated to improving acute stroke care; originally funded as a Paul Coverdell National Acute Stroke Registry by the Centers for Disease Control and Prevention in 2004, provided the initial COMPASS Study infrastructure |
| Regional NC Stroke Networks | Regional stroke networks across the state include hospitals that are receiving stroke education and updates on the latest in stroke care. COMPASS is including these stakeholders because their yearly meetings are a convenient forum for updating these participants on COMPASS |
| Training institutions | |
| Northwest Area Health Education Center (NW AHEC), NC | Has existing infrastructure to train health-care providers across the state. By partnering closely with the Northwest AHEC, NC we gained access to all AHECs in NC |
| East Carolina University Center for Health Disparities | Expertise in tailoring health messages and materials for special populations |
| Payer | |
| NC chapter of a national health insurance company | Expressed interest in using study results for benefit design which has potential to support sustainability of the intervention |
| Policy maker | |
| American Heart Association/American Stroke Association | It has the largest national and international footprint to disseminate study results to both the public and the medical community (if warranted) |
| Justus-Warren Heart Disease and Stroke Prevention Task Force | It includes legislators and other stroke champions and key stakeholders that can inform, recommend, and support critically important policy changes at the state level that facilitate improved stroke care, including assuring funding to hospitals |
| NC Stroke Advisory Council | This body informs the legislative Justus-Warren Heart Disease and Stroke Prevention Task Force including providing findings and recommendations for development and maintenance of NC’s Stroke System of Care |
| NC Department of Health and Human Services | The Community and Clinical Connections for Prevention and Health Branch supports communities in implementing evidence-based programs relevant to stroke recovery (eg, Check, Change, Control program for hypertension management, Diabetes Prevention Program, and Diabetes Education Recognition Program for diabetes self-management education and support), and acts as a key resource for patient-facing and caregiver-facing materials (eg, disseminating user-friendly video on how to accurately check blood pressure at home, and various medication assistance programs) that are critical to recovery after stroke |
| NC Stroke Association (NCSA) | The NCSA is committed to addressing the fundamental barrier to timely stroke treatment in rural and underserved NC counties by funding hospitals to become Acute Stroke Ready. It provides programs to hospitals across the state for improving stroke care, especially with respect to stroke risk factor screenings, and post-discharge follow-up. These programs will continue in parallel with COMPASS. In addition, the NCSA can be a resource for dissemination of COMPASS following the trial |
SES, socio-economic status; NC, North Carolina; NCDHHS, NC Department of Health and Human Services; IT, information technology; eCare Plan, electronic care plan; PC, personal computer; NCSA, NC Stroke Association.