Table 3.

Community-partnered participatory research process in patient-caregiver work group at transition to app development.

Principle		Example (quote)
Coequal leadership and power
	Attention to patient-provider information and power imbalances (eg, creation of platforms for app design and engagement) Input of patient and family stakeholders on app design features	“I think it would be helpful to have a way to get information about your diagnosis and the chemo.” “[Establishing] a way to email a doctor where you don’t have to know his email address.”
Two-way knowledge exchange
	Rich interaction of academic leaders and patients Inclusion of patients in provider work groups (and vice versa)	Patient: “The advanced stage breast cancer survivor has a negative connotation.” Provider Response: “So I think we have to rebrand this, so people see it as a vital tool that ensures their success during their treatment.”
Trust development
	Frequent exchange of vulnerable experiences Disclosure of conflicts with health system and providers by patient-caregiver stakeholders	“It’s not that you’re dying. You’re about to die. So you need to have an advanced directive. People need to know what your wishes are.” “I had a really painful morning. And then I did my activities during the day and I forgot about the morning, That’s something that the doctor needs to know. But they’re not clear on that.”
Respect
	Repeated invitations for stakeholder perspectives Agreement and expansion by stakeholders of academic leader suggestions	Leader: “[We’re] hoping we could think through how we might be able to help the experience of individuals in palliative care.” Leader suggestion: track “how’s your pain going?” Patient response: “That would be actually very helpful because you don’t know what you don’t. I think that’s actually a really good idea.”
Partnered development
	Interaction of academic leaders and patients in defining goals (eg, creating informational resources and access to a shared portal)	Technology lead: “Do you think you would want a summary screen?” Patient response: “I think for me, a little journal, I keep it on my phone. If this was on the system, then I wouldn’t have to think, how many days was there pain, you know, moderate pain or severe pain.”
Equity
	Inclusion of multiple patients and caregiver with racial and ethnic diversity Attention to potential disparities	“I learned being sick over these last years that every single person, even with the same diagnosis handles it differently.”