Participatory Approaches to Qualitative Research (PAQ): Comparing Two Approaches to Patient, Public and Clinician Involvement in Qualitative Research

Summary

The goal of this trial is to compare two types of patient, public and clinician involvement (PPCI) in research: Consultative PPCI and Collaborative PPCI. The study team will compare these methods of PPCI in a randomized clinical trial (RCT) in which PPCI participants will engage with research teams on one of three real qualitative research interview studies addressing topics: 1) pediatric mental health, 2) cancer screening and 3) serious illness. Qualitative interviews are conversations with people about their experiences and perspectives. In all three qualitative studies, PPCI participants will help us at every stage of the research, from design (making choices about how to set up the study) through dissemination (sharing findings). The researchers do not know about any quantitative (numbers) evidence from RCTs about how well different PPCI approaches work. As far as the study team knows, this is the first RCT of PPCI approaches. Given this gap in knowledge, the research question is: How does a Consultative PPCI approach compare to a Collaborative PPCI approach in increasing engagement and partnership trust in research, particularly among historically underrepresented groups? The researchers' best guess (hypothesis), considering the information available, is that Collaborative PPCI will increase PPCI participant engagement, trust and the patient-centeredness of research more than Consultative PPCI.

Eligibility

Inclusion criteria \& Exclusion criteria across three sub-specialties:

Pediatric mental health

Inclusion:

* Adults aged ≥18 years
* Can communicate in English
* Able to take part in research activities via a computer or a smartphone
* Patients, care partners, clinicians, other healthcare professionals, teachers and school staff, health policy experts, and community members
* Has lived experience or professional expertise relating to pediatric mental health

Exclusion:

* Children \<18 years
* Cannot communicate in English
* Adults unable to provide verbal consent
* Prisoners
* Unable to take part in research activities via a computer or a smartphone

Generalized cancer screening

Inclusion:

* Adults aged ≥21 years
* Can communicate in English
* Able to take part in research activities via a computer or a smartphone
* Patients, care partners, clinicians, other healthcare professionals, health policy experts, and community members
* Is eligible for population-based cancer screening tests (breast, prostate, cervical, colorectal cancer), or has lived experience or professional expertise relating to generalized cancer screening

Exclusion:

* Children \<18 years
* Cannot communicate in English
* Adults unable to provide verbal consent
* Prisoners
* Unable to take part in research activities via a computer or a smartphone

Serious illness experience

Inclusion:

* Adults aged ≥18 years
* Can communicate in English
* Able to take part in research activities via a computer or a smartphone
* Patients, care partners, clinicians, other healthcare professionals, health policy experts, and community members
* Has lived experience or professional expertise relating to serious illness (defined as "a health condition that carries a high risk of mortality and either negatively impacts a person's daily functioning or quality of life or excessively strains his or her caregivers."

Exclusion:

* Children \<18 years
* Cannot communicate in English
* Adults unable to provide verbal consent
* Prisoners
* Unable to take part in research activities via a computer or a smartphone

Note: We will not specifically exclude pregnant women, so they may be included incidentally.

Conditions4

Locations2 sites

Browse More Trials