Table 3.

Attitudes about KPWA involvement in risk notification

Outreach type Summary of findings	Quotes
KPWA contacts family members directly
Open FBN1: 7 (40%) RYR1: 11 (55%)	“Oh, yeah. I think that would be wonderful ... it would be so much easier instead of me trying to spit out what I think they need to have done or whatever. You folks could do it in a more—they know what they are talking about and in a more business-like, you know, informational way than I could.” (FBN1)
	“You know, you guys are really good about identifying yourself, I think that would be fine.” (RYR1)
Open, with conditions FBN1 12 (60%) RYR1 8 (40%)	“Yes, provided I had the opportunity to alert them to that and get their permission … they would certainly have the right to refuse” (FBN1)
	“Yeah. Go ahead and they can contact the family member. I’d prefer to do it first, but it’s important enough that they should be contacted anyway.” (RYR1)
Not open to this* FBN1: 1(5%) RYR1: 1 (5%)	“No. I would do it ... they would be angry and upset and hurt if they did not get that information from me.”
	“Nope. That’s my job.” (RYR1)
Not sure: 0	N/A
KPWA contacts family member’s KPWA physician
Open FBN1: 6 (30%) RYR1: 10 (50%)	“Absolutely ... I would think that that would be even more efficient than me sending a message that would not be very precise, you know, it would not fill in a lot of gaps. So it makes sense to have somebody with the data, the actual data provide the information.” (FBN1)
	“That’s, you know, I think—physician to physicians, fine.” (RYR1)
Open, with conditions FBN1: 11 (55%) RYR1: 8 (40%)	“I think I’d rather have that conversation with the family members first and see, you know, what their preferences were.” (FBN1)
	“I would say I would have to talk to them first and see if they would want their physicians to know what’s going on. I do not know why they would not, but still, I guess it’s a privacy thing.” (RYR1)
Not open to this FBN1: 2 (10%) RYR1: 2 (10%)	“No ... that one I do not want to cross I think. I do not want to cross that line.” (FBN1)
	“Yeah, not comfortable [with this].” (RYR1)
Not sure FBN1: 1 (5%) RYR1: 0	“I do not know. Maybe I would not—I am not sure. … Well, I really do not know.” (FBN1)
KPWA places notes in family member’s EMR
Open FBN1: 5 (25%) RYR1: 8 (40%)	“Yeah. I think that’s a good thing. I really think that it’s important for people to know what sort of things they might be at risk for, since they have the technology to find out some things now. I think it’s a good thing.” (FBN1) “If I delay in talking with [my relatives], then that’s on me. But it’s more important the note be there then to have less worry. And there should be less worry anyway.” (RYR1)
	“In this case I think it’s a little more serious [than FBN1]. It seems like if you are likely to die—surgeries are more and more common. And it seems to me that [KPWA placing note in relatives’ EMR] that would be an appropriate thing to do.” (RYR1)
Open, with conditions FBN1: 10 (50%) RYR1: 9 (45%)	“I am fine with it. I probably would have to check with my siblings and make sure they are okay with it. I would not want them to be surprised or, you know, why was a note there and not know about it.” (FBN1)
	“I would talk to them first and say what do you think, if they can do that. Or can—I was going to say, or can the doctor give you a letter to put in your file.” (RYR1)
Not open to this FBN1: 3 (15%) RYR1: 3 (15%)	“No, I do not want to put things in other people’s medical records.” (FBN1) “And putting a note in the medical record, I would, you know, it’s a little—it’s—I would still not opt for that. I still think that would be risky in this uncertain political climate.” (RYR1)
Not sure FBN1: 2 (10%) RYR1:0	“I think the first thing to come to mind when you say that would be; would that, in any way, affect their access to insurance?” (FBN1)

*Single participant