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. 2022 Jun 23;6(6):e33849. doi: 10.2196/33849

Table 4.

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

Principle Example (quote)
Coequal leadership and power

  • Input of provider stakeholders on app design features

  • Attention to patient-provider power imbalances (eg, creation of platforms for app design and engagement)

  • Provider: “If a patient has pain and they’re on pain medication, they could potentially be inputting their pain symptoms on a daily basis into this web app. And that gets fed back to the clinician at a regular visit.”

Two-way knowledge exchange

  • Rich interaction of academic leaders and providers

  • Inclusion of patients in provider work groups (and vice versa)

  • Provider: “The other thing I would love is a, a calendar that records things for the patients, because we constantly use that as a way to track therapies as well.”

  • Technology response: “Manual would be a way to do that, to see if it’s helpful and if it works and we can sort out to automate.”

Trust development

  • Frequent exchange of vulnerable experiences

  • Disclosure of conflicts with health system and patients by each provider stakeholders

  • “I don’t know if I can do that for every patient. Do we expect them to actually be logging into the website?”

  • “Physician or practitioner who is having to go into their inbox multiple times a day, dealing with everything that comes through and there’s no priority currently.”

Respect

  • Repeated invitations for stakeholder perspectives

  • Agreement and expansion by stakeholders of academic leader suggestions

  • Technology lead: “Is it possible to help improve aspects around palliative care with technologies like apps, could they be tailored and created in a way that might address problems that we are having either as providers or from the patient’s perspective or caregivers of palliative care?”

  • Provider: “I mean, I welcome more data rather than less. As long as they can do it.”

Partnered development

  • Interaction of academic leaders and providers and patients in defining goals (eg, creating informational resources and access to a shared portal)

  • Provider: “I think when I first get someone who’s newly metastatic, cause it’s a whole shift in psyche. And how you treat them, getting started on new therapy. And even when they progress, even though they’ve been through it, I’m back at the beginning again. And so how do we get them moving through that next set of events and getting therapy.”

  • Technology response: “If you’re working with a patient, you can say, well, how often do you feel you need a reminder? And then do you have the flexibility of every day, every other day? And if they are going to forget, you need a family reminder.”

Equity

  • Inclusion of patient caregivers and members representing ethnic diversity

  • Attention to potential disparities

  • “We probably should include some kind of either logistical or financial scale, because sometimes those issues contribute to compliance and simply naturally, but patients are not prompted well, to be able to afford their treatment.”

  • “One of the things we have to be careful because if we don’t we create the system that others cannot access and we are inadvertently discriminatory.”