Woolf et al recently published an account of PPI in their practice-based research, and the degree of impact the activities had on the research design. Below is a summary detailing their PPI activities during the development of an online intervention for cancer screening.
For the full text, click here https://www.ncbi.nlm.nih.gov/pubmed/27044956 and supplementary material here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4868544/bin/NIHMS785200-supplement-Appendix.pdf.
Authentic Engagement Of Patients And Communities Can Transform Research, Practice, And Policy
Woolf, Zimmerman, Haley and Krist (2016)
This study aimed to develop an online intervention for cancer patients pre- and post- screening, within a primary care setting. Specifically, the online module would be used pre-screening to ask about decisions they were facing, and to collect information post-decision making about how well their concerns were addressed during the screening process.
The study took place over 2 years, with the first half the project dedicated to patient and stakeholder involvement. There was input from patients and primary care clinicians. The patient involvement activities informed on study design, as well as the questions that patients were asked. The clinician involvement was additionally focused on intervention planning and implementation.
Researchers conducted a total of 10 focus groups with patients; these covered general themes of concern about cancer screening and online discussions, along with two in-person working group meetings that evaluated documents, wording, and conducted prototype testing. There was also a project oversight advisory board of 14 patients, who met monthly for the duration of the study. Clinicians were also involved in this development phase, and had their own monthly working group which concentrated on planning and implementation of the module.
The impact of this extensive involvement activity was clear. 772 online queries were generated about the questions to be included in the module, and they underwent 23 revisions. The research team calculated that 46.1% of the comments were patient-generated (compared to 35.5% of researcher-generated questions). The authors report that patient involvement influenced project objectives, module readability, added important topics missed by clinicians and researchers, and elevated the module’s sensitivity to certain patient concerns. Clinician involvement was also seen as beneficial, and aided implementation plans for busy primary care practices.
Whilst the authors acknowledged that this type of activity can be challenging, they highlighted the importance of this process in research in clinical practice, with authentic service user and stakeholder involvement ensuring study protocols and results are user-oriented. They also emphasised that there needs to be a culture change in the way researchers view patient involvement. Rather than attempting to increase and improve public involvement with their research, researchers should instead be addressing how their research can be made more relevant to the public. When seen from this viewpoint, PPI practices are an obvious way to address this. Making such changes in the approach to PPI highlights to the public and stakeholders how their involvement can benefit and shape research priorities and themes, and encouraged further involvement. Further, having stakeholders engaged in research increases the impact of study results.