Table 5.

Barriers, facilitators, and needs identified based on participants’ perspectives (phase I): themes and subthemes

	Themes	Subthemes	Qty
1. Barriers	1.1. Limited knowledge	1.1.1. Provider limited knowledge/training	3
		1.1.2. Patient/community limited knowledge	9
		1.1.3. Difficult subject matter/information too dense	16
	1.2. Ethical issues	1.2.1. Ethical concerns	2
		1.2.2. Stigma	3
	1.3. Logistical issues	1.3.1. Insufficient patient/parent engagement	1
		1.3.2. Insufficient resources/genetic counselors	1
		1.3.3. Technical challenges/EMR/internet access	4
		1.3.4. Logistical challenges	3
	1.4. Other	1.4.1. Cost/insurance coverage	1
		1.4.2. Other	1
2. Facilitators	2.1. Knowledge/training	2.1.1. Knowledge/awareness/information	8
		2.1.2. Providing training	1
	2.2. Establishing partnership	2.2.1. Collaborative environment	4
		2.2.2. New/future research priorities	1
	2.3. Other	2.3.1. Improve care/health outcomes	3
		2.3.2. Easy/Interactive presentation style /videos	8
3. Needs	3.1. Education	3.1.1. Providing education	4
		3.1.2. Easy to understand and interactive resources/glossary	13
	3.2. Engagement	3.2.1. Patient/parent engagement/more overall interaction	6
		3.2.2. Social and media outreach	2
		3.2.3. Future research collaboration	2
	3.3. Infrastructure	3.3.1. Developing Infrastructures (linking clinical and research works)	1
	3.4. Other	3.4.1. Patient-centered	3
		3.4.2. General comments about project	17
		3.4.3. Other	3

EMR electronic medical records, Qty number of times a given subtheme was noted in participants’ feedback