Kudos to Dominique Bulgin, postdoctoral fellow, her mentor Paula Tanabe, associate dean for research, and her entire team for their award for Bulgin's REACH Equity Research Scholars Development proposal entitled: “Piloting Telehealth Personalized Health Planning in Shared Medical Appointments for Sickle Cell Disease.” This proposal was awarded $5,000 for a one-year period with a start date of July 1, 2020.

Sickle cell disease (SCD) is a genetically inherited disorder of the hemoglobin that is associated with a severely shortened lifespan and many serious complications requiring complex self-management strategies. Due to the complexity of SCD, conscientious self-management is required to improve quality of life, morbidity and mortality, and cost of care. Application of a telehealth Personalized Health Planning in Shared Medical Appointments (PHP-SMA) program could help improve SCD self-management. Personalized Health Planning (PHP) is a model of care that emphasizes patient-centeredness, prevention and patient engagement. SMAs are an alternative to traditional one-on-one patient visits that can improve patient engagement, health self-management, adherence and outcomes. During SMAs, clinicians and health coaches see a group of patients (six-12 at each session) together in a longitudinal series of medical visits to provide comprehensive care for a chronic condition. There are limitations in the current in-person model of the PHP-SMA, including patients’ difficulty attending the sessions due to transportation issues and family/work commitments. The COVID-19 pandemic has placed additional limitations on access to care for individuals with chronic illnesses that have led to unprecedented expansions of telehealth. The proposed study will pilot a telehealth personalized health planning in shared medical appointments program for adults with SCD.

The specific aims are to:

• 1) Adapt the PHP-SMA curriculum for SCD and

• 2) Pilot test a telehealth SCD PHP-SMA for feasibility and acceptability. Aim 2 will assess the

  • 1) Number of participants recruited vs. refused to participate in the pilot,

  • 2) Attendance and retention rates of the telehealth PHP-SMA,

  • 3) Acceptability of the telehealth PHP-SMA as measured by the participants' ratings of

    • (a) the usefulness of the PHP-SMA,

    • (b) whether or not they would recommend PHP-SMA to another patient with SCD, and

    • (c) extent to which the PHP-SMA changed their engagement in care [Patient Activation Measure and Sickle Cell Self-Efficacy Scale].

Finally, focus groups and individual interviews will be conducted with participants and stakeholders (health coaches and providers) to obtain feedback on implementation of the telehealth SCD PHP-SMA pilot. The synergy of these two evidenced-based interventions for chronic disease self-management could be ideal for individuals with SCD. Future studies will assess the impact of the PHP-SMA program on health outcomes, health care utilization and patient reported outcomes.