Engagement partners
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Patient organizations and advocacy groups (n=13, 65%) |
“I also think that patient advocacy groups, of course, can support a lot because they can act as an important connector.” [P12-DE]
“there’s lots of good societies and charities that work with patients, you could approach them directly, try get involved with them.” [P3-TP]
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Clinicians (n=8, 40%) |
“The key thing there is it was the clinicians that had this trusted relationship with the patients and ask them to do this.” [P13-HCP-TP]
“So, to find a patient through a specialist who knew which patient he could ask for and also knew how to bring them into a group and introduce them.” [P1-In]
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Community involvement (n=6, 30%) |
“I think being more involved in the community that you’re serving as well. So as a company, taking part in charity events relating to the health area, maybe, that you’re working in. Going along and volunteering at events, opening up opportunities.” [P15-TP]
“And even being present in forums... how are we present in those discussions? Patients will find themselves in communities, social media, all of that. And that’s a great way of scoping out new opportunities also. But somehow the organizations need to be present in those discussions.” [P4-TP-Ph]
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Web-based patient communities (n=5, 25%) |
“So, I think partnership with the patients, so whether it’s a patient organization or the online patient community, but for me, I always say I think it needs to be a mixture because it needs to truly represent the community as a whole.” [P16-HCP-Ph]
“When you work with a patient that has got that influence within a community, particularly within an online community, then you can really get that product or that solution out there and you can build that trust because patients trust other patients like themselves.” [P6-PE]
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Novel approaches
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Patient experts (n=13, 65%) |
“I think some of the facilitators are now called patient entrepreneurs. We see this a lot in the area of diabetes because they are the experts. And you have to see a GP or specialist very regularly, and then you will quickly realize that you’re the expert and not the physician is the expert.” [P12-DE]
“And you see this happening more and more often, where patients are being treated as consultants.” [P8-TP-Ph]
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Patient engagement agencies (n=4, 20%) |
“But now with rising communities and patients’ agencies that are coming up there and so on, I think we’re now at the point where we are only able to get the voice into the complete process.” [P5-PE-DE]
“There are now agencies as well that would help us connect in their indications.” [P9-Ph]
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Embedding them in the development teams (n=12, 60%) |
“But then I think they should be part of the team or at least of the advisory board so you don’t lose focus of that. It’s also kind of a strategic decision.” [P12-DE]
“You would need patients right in there on the innovation teams driving the agenda.” [P13-HCP-TP]
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Expectation management (n=7, 35%) |
“You need to be very clear in terms of managing their expectations as to the context of what technology can, cannot do, what the aim is and that we’re not going to solve everything here.” [P14-TP-Ph]
“And it also helps manage expectations at this stage, to be really transparent and make sure that we understand each other and why, technically, some things are just not feasible, even though we wanted to do them.” [P9-Ph]
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Moderation services (n=6, 30%) |
“Sometimes part of the investment needs to be in professional facilitators to manage activities and also neutral facilitators are actually going to facilitate a more fair and open engagement process, which will reduce the risk of bias because there is that kind of risk that you might lead patients or your co-creative partners down a certain route that you hope the process is going to go.” [P6-PE]
“If you really want to do this systematically, you probably have to work with an external partner who are experts in doing this. And I think that from what I have seen, a lot of startups, they kind of miss that point.” [P12-DE]
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