Unit III Thought discussion

In case study 2, there is evidence that research outcomes can be impacted by PPI. As discussed in previous thought questions, it is clear that the research priorities of patients may differ from those of the researchers. Case study 2 is a great example of this, demonstrating the real value and impact of PPI.

In case study 1, the evidence supporting the impact of PPI is less so than in case study 2 and 3. Possibly, I think that even without PPI, it would be fairly clear that parents of children with asthma would support a research study into prevention of exacerbations, therefore the aim of PPI here may be to ‘endorse’ the research bid and secure funding, rather than use patient/public’s ideas to (consulting rather than collaborating). Also, with ‘consultation’ of parents, it could have been decided by researchers alone that school holidays would impact the timing of interventions, and that invitations should be addressed to parents rather than children. In addition, it is a good idea involve children be involved by choosing the logo, however this is a less involved version of PPI (consulting rather than collaborating), and perhaps the children could have designed the logo. Case study 3 shows the strongest form evidence supporting PPI (full collaboration), for which impact is evidenced by actually having patients ideas turn into research (e.g. PhD funded studentships and patients as co-facilitators).

The PLEASANT study has a webpage: https://www.shef.ac.uk/scharr/sections/dts/ctru/pleasant/index, where one can find the study description and information about PPI in the study.

There were 3 PPI consultation events. For each of the consultations a report recorded: activities held, topics discussed, input from children and parents, changes made upon PPI recommendations and a summary of the consultation (you can find them on the webpage).

After reading the reports I found that PPI had a big impact on the research process, namely:

• PPI suggested that letters should be addressed to parents instead of children
• PPI suggested changes to the letters
• PPI asked for translations to be available
• PPI suggested changing the timing of sending the letters to be more appropriate
• PPI suggested minor changes to the lay summary of the REC application to make it more understandable
• Logo was developed together with PPI

I could not find evidence of impact on research outcomes, on patients and members of the public or on researchers. However, the researchers state in the webpage that: “A paper reflecting on the PPI in the design and conduct of this study will be submitted to a peer-reviewed journal at the end of the trial.” Maybe in that paper this gap in evidence could be found.

Staniszewska et al sate in their paper that: “better reporting will strengthen the PPI evidence-base”¹ and for this purpose they developed a CONSORT-like guidance,² the GRIPP checklist. I agree that if PPI impact is assessed and reported in a standard format, like the one proposed by the authors, one could easily understand “what PPI works, for whom, in what circumstances and why.”¹

1. Staniszewska S, Brett J, Mockford C, Barber R. The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research. Int J Technol Assess Health Care [Internet]. 2011 Oct [cited 2015 Feb 19];27(4):391–9. Available from: http://www.ncbi.nlm.nih.gov/pubmed/22004782

2. Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect [Internet]. 2014 Oct [cited 2016 Jan 6];17(5):637–50. Available from: http://www.ncbi.nlm.nih.gov/pubmed/22809132

The three case studies presented clearly show substantial evidence of positive impact on the quality of research. The effect was on research processes, outcomes, the researchers themselves, patients and members of the lay public concerned.

The studies are a good illustration that every trial situation is unique and, therefore, PPI will be different in each situation. The study outcomes, local regulations, and study participants determine methods and evaluation of PPI that will be used. Qualitative methods are required, for example in surveys, to determine if there is an impact on outcomes, the research process, the patients, members of the public, participant observation in real time, and the researchers.

 In the PLEASANT trial, successive consultations with parents/guardians and asthma-affected children/students significantly influenced the trial preparations, intervention timing, and eventual data interpretation. The research outcomes would, conceivably, be positively influenced.

Similarly, PPI in the trial on acute stroke increased the interest of patients and the public in such a way that they were free to advise on the study design and types of outcome measures. As a consequence, the researchers introduced new outcome measures through enhancing the standard assessment questionnaire; thus making the study results “more relevant to the patients”.

The AUKCAR scenario is perhaps the most impressive of the examples. The Centre applies PPI throughout, from research proposal and design to results dissemination.

The impact is, correspondingly, far more comprehensive. There are remarkable effects on individuals’ and families’ lives; subsequent approaches to patient management and follow up strategies, among others, are cited.

It is difficult to determine if there are gaps in the evidence, given that methods of research conduct and PPI impact assessment may vary considerably. The PPI impact on quantitative study methods, for instance, is not particularly highlighted in the case studies considered.

As others have mentioned all three studies show evidence of PPI impact

The PLEASANT trial PPI activity had impact on the trial procedures (wording , timing and recipients of the study invitation letter) Like Gillian my first thought was also that this was common sense and researchers could have come up with these solutions themselves including the idea to involve children in design of study logo. However i would acknowledge that as a researcher I know that sometimes we get so lost in the science of the study proposal that common sense often eludes us

In the stroke study (Ali et al)PPI resulted in impact on research outcomes based on feedback from patients

AUKCAR by Asthma Charity certainly shows full cycle collaborative PPI impact as mentioned by others as well. However this would only be possible in centres conceived with this idea in mind and with trained experienced people involved at the outset who ensure that PPI is integrated in every step of the research activity 

Olivia's log and comment from a member of the patient advisory group shows the positive impact PPI has on those involved in it however such evidence does not exist for researchers . For researchers almost all impact is based on material gains from PPI (improved research quality , funding , PhD studentships) however i believe a not so explored area of PPI impact would be the personal sense of fulfilment a researcher feels when collaborating with service users in research resulting in more meaningful outcome