Development of the Family Heart Foundation™ Flag, Identify, Network, Deliver—Familial Hypercholesterolemia (FIND-FH™) Implementation Toolkit

Study Funding

Funded in part by AMGEN.

Background/Synopsis

Implementation scientists note that best practices often fail to generalize to other settings because of differences in culture, expertise, and infrastructure. Over 18 months, five healthcare systems and a team of patients with FH participated in a Family Heart Foundation (FHF) led collaborative learning network (CLN) with the aim to improve Familial Hypercholesterolemia (FH) diagnosis and care.

Objective/Purpose

To share best practices identified by the FIND-FH CLN to help primary and specialty care clinics improve diagnosis and care of patients with FH. To achieve this objective, we developed a flexible implementation toolkit for clinics to customize to meet their specific needs.

Methods

A novel implementation science approach is being used to design a FIND-FH Implementation Toolkit to arm care teams with effective quality improvement strategies. This framework organizes common problems/barriers and best practices identified via literature review, subject matter experts, patients with FH and field experiences at five participating CLN sites. This content is organized into a Problem(s)—General Solution(s)—Specific Solution Option(s) matrix using a multi-step process. CLN participants provide feedback and refinements to the matrix, which is curated by the FHF's implementation science team. A nominal group (expert consensus) technique is being used to assure the Problem—General Solution pairs are complete and a subsequent multi-voting process used to rate the importance of each problem-solution pair. Items with variation in ratings are discussed further and the voting repeated to arrive at consensus. The Specific Solution Option(s) in the toolkit describe: a) Option Details; b) Resource Needs; and c) Advantages/Tradeoffs.

Results

The methodology described has been completed for the “FLAG” and “IDENTIFY” steps of the FIND-FH process. 17 common Problems that undermine diagnosis of FH patients by PCPs and specialists, were identified. Up to four General Solutions were defined for each Problem with up to 6 Specific Solution Options for each General Solution. The expert consensus process allowed elimination of problems deemed low importance/impact. (See Supplemental Table 1)

Conclusions

Development of an implementation toolkit that provides multiple options to address common problems undermining FH care proved feasible. Next, we will complete the “NETWORK” and “DELIVER” steps of the FIND-FH process and validate the first version of this.