Difficult but productive conversation occurs at October P-SCIP learning session

By Michael J. Happy / P-SCIP Web Project Manager

SOUTHFIELD, Mich. -- The conversation was sharp and direct during a spirited learning session at Lawrence Technological University on Oct. 10.

On one side, there was a passionate community health worker from a Medicaid health plan pleading her case for home visits to contact hard-to-reach parents or guardians of children with sickle cell anemia (SCA).

On the other side, there was a fierce advocate and mother of a child with SCA insisting that unexpected home visits are intrusive and should never be used by health plans.

 It was the kind of exchange that could have resulted in a full-fledged argument, leading to nothing getting done to help children with SCA receive the preventive care they need to avoid serious health complications, such as chronic pain, strokes, and infections.

But thanks to representatives from the Pediatric Sickle Cell Improvement Program (P-SCIP) who mediated the conversation, cooler heads prevailed. Lessons were learned on both sides, hopefully, leading to innovative solutions for the very challenging task of locating all kids with SCA in Southeast Michigan and ensuring they benefit from what their Medicaid health plans have to offer.

“It should be a widely used best practice to co-design strategies for improvement with the people we are looking to help; this is fundamental to equity work,” said Cori Davis, a quality improvement specialist for P-SCIP who led the learning session. “The learning session was just one example of people having positive intent around the idea of making a connection through a home visit without understanding the potential for psychological harm this may cause families. The result might be deploying an intervention that will likely fail, reinforcing mistrust with the families’ health plans that are attempting to help.

P-SCIP is a quality improvement program funded by the Michigan Department of Health and Human Services (MDHHS) and facilitated by a research team in the Susan B. Meister Child Health Evaluation and Research Center (CHEAR) that guarantees all Medicaid health plans in Southeast Michigan are financially incentivized to improve performance with three preventive-care measures for children with SCA: annual transcranial Doppler screening to prevent strokes, daily antibiotics to prevent life-threatening infections, and daily hydroxyurea to prevent end-organ damage and reduce pain crises that can lead to hospitalizations.

The learning session brought together about 60 stakeholders -- representatives from all Michigan Medicaid health plans; a group of SCA "warriors," the patients and parents themselves; officials from the MDHHS; and hematologists from Children’s Hospital of Michigan, Hurley Children’s Hospital, and Michigan State University -- with the goal of fulfilling P-SCIP's primary mission: to improve the quality of care for children with SCA in Southeast Michigan and beyond.

P-SCIP director Gary Freed, M.D., M.P.H., a researcher in CHEAR, was pleased with the turnout and sometimes "spicey" dialogue.

"We're dealing with some really demanding issues here, so that's going to lead to tough conversations," said Freed, who founded P-SCIP in January 2021. "It got a little touchy at times, but that's how change takes place: old-fashioned give and take for a common good."