Table 6.

Participants’ suggestions on how to overcome the gaps in patient engagement in eHealth development (N=20).

Theme		Sample quotes
Awareness and education
	About patient engagement value (n=7, 35%)	“Making sure that people understand and have hands-on experience of what’s the value that patient engagement brings.” [P16-HCP-Ph] “Probably being more aware for the companies about the real benefit for the solution in having patients involved might be something that, let’s say, can influence decision makers and having them participating.” [P10-DE]
	About PEa opportunities (n=3, 15%)	“I think from a patient side, patients have no idea that these opportunities exist. So, you’re not reaching the right patients. They don’t know.” [P7-PE-TP] “Maybe also it’s relevant to create awareness on the developer side how patients can be involved and over which platforms.” [P20-PE-DE]
	About PE skills (n=2, 10%)	“I would argue training to make everybody far more adept at utilizing health research terminology, patient advocacy terms, and sort of the training capacity stuff that EUPATI is doing.” [P11-PE] “I think just getting that insight on what it is and how you do it, those are things which are trainable, right.” [P14-TP-PH]
	About compliance (n=2, 10%)	“Just having a better understanding of the regulatory landscape. I’m not even asking to change the full regulatory landscape. I’m just asking for making it simple enough to be understood, so small companies that don’t have these regulatory teams can actually understand it, and it’s actionable, and they know what to do. And doing a lot more education.” [P19-PE-DE] “I’ve been helping the recruitment of global head of regulatory affairs recently; my role was to assess the patient engagement capacity. And the couple of people I interviewed, none of them were aware. They were delighted to see what I was sharing with them, but they were not aware. They didn’t know what the EMA is doing.” [P17-PA]
	About patients’ diversity (n=1, 5%)	“I think it’s actually promoting the perception, the difference between a lay and a patient expert.” [P11-PE]
Mindset shift
	Shifting to a more patient-driven care (n=7, 35%)	“I have a personal belief that actually the patient community should actually lead these efforts by putting out what are the unmet needs. And not as a response to briefing from one organization with one objective which is already pretty well-defined.” [P17-PA] “But just look at how that consumer journey happens in other industries and perhaps bring lessons learned from those other industries into health care. I think the consumer aspect is really key to look at other ways around how a patient will be engaging and expecting to have their journey improved.” [P4-TP-PH]
	Fighting the stigma (n=2, 10%)	“This was really a time where you had to hide everything of being a chronic patient—people living with a chronic disease… I think it will, hopefully, get less stigma. And patients will be more and more able to speak up.” [P5-PE-DE]
	Organizational culture (n=2, 10%)	“It takes a lot of courage for the organization to say, let’s try out whatever the new tech players offer to not have to build the wheel all of the time and have a fast time to patient time to release on top of that.” [P4-TP-Ph]
Clearer regulatory guidance (n=8, 40%)		“Having more clarity around that. And it’s almost like having clear guidelines within the health system, that this is- the way with clinical trials and so on.” [P13-HCP-TP] “To have some sort of, I don’t even want to call it organization. It can even be a website. But somewhere where the regulatory landscape is easy and that they help you. Because that would help reduce the resistance and the fears inside of the companies.” [P19-PE-DE]
Incentivizing patients (n=8, 40%)		“Create the right level of incentive or engagement, where it’s no longer a volunteer activity, but it is—let’s just use the term, it’s a clear contract with clear ins and outs.” [P14-TP-Ph] “I think it’s important to incentivize people in some way because most people can’t be bothered to give their feedback or—yeah, give a real motivation as to why people should get involved.” [P7-PE-TP]
Build trust and transparency (n=6, 30%)		“It’s this trust factor. So, building trust with patients, spending time with them, to align on how you want to work together.” [P6-PE] “Because participation is also built on trust and so everything has to be very transparent and clear.” [P10-DE]
Frameworks to measure value (n=2, 10%)		“We need to admit that whether you are for or against patient engagement until we measure the value and so on, it’s kind of anti-discussion. Now it’s time to actually measure what works, what doesn’t work, measure the quality.” [P17-PA] “Could somebody quantify whether that actually has a statistical difference in the outcome? That’s very, very hard to do because every tool is so different. But if you could quantify that, then you create a business case for leaders to invest in this direction.” [P8-TP-Ph]

^aPE: patient engagement.