Public and patient involvement in quantitative health research: A statistical perspective

Hannigan, Ailish

doi:10.1111/hex.12800

Cited by 20 publications

(18 citation statements)

References 29 publications

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“…The PPI in health research literature should help inform future studies on the risks and benefits of patient involvement in HE modeling. However, this literature has tended to focus on PPI in qualitative health research, and PPI in quantitative research may present unique variables, such as statisticians' ability to communicate about analytic decisions [ 19 ]. Furthermore, the health literature has not emphasized the role of PPI in managing value judgments in research, as literature in philosophy of science has done [ 4 , 16 ].…”

Section: Introductionmentioning

confidence: 99%

Health Economists on Involving Patients in Modeling: Potential Benefits, Harms, and Variables of Interest

Harvard

Werker

2021

PharmacoEconomics

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Background Patient involvement in health economics modeling has been advocated on numerous grounds, including as a way to better manage social and ethical value judgments in the modeling process. However, some have pointed to potential risks and variables that could influence the overall benefit of involvement. To inform future research, there is a need to generate knowledge on potential benefits, harms, and variables relevant to patient involvement in health economics modeling. Methods This analysis used data from a qualitative study in which 22 health economists were asked their views on the possibility of involving patients in the modeling process. Using qualitative methods, the authors organized participants' responses into theory-driven categories (“potential benefits”, “potential harms”, “variables of interest”) and identified data-driven themes and subthemes within those categories. Results Findings point to potential benefits and harms to the model, modeler, patient, and modeling process. Variables of interest relevant to future research included patients' specific roles, modeler and patient characteristics, the goals of modeling, dynamics among participators, and features of high-level procedures. The findings raise a number of specific questions that may be fruitful to explore in future research on patient involvement in health economics modeling. Supplementary Information The online version contains supplementary material available at 10.1007/s40273-021-01018-5.

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Section: Introductionmentioning

confidence: 99%

Health Economists on Involving Patients in Modeling: Potential Benefits, Harms, and Variables of Interest

Harvard

Werker

2021

PharmacoEconomics

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“…From the public and patient partners’ perspective, a respondent pointed out that they often felt underestimated and another that tokenism is the main barrier to involving public and patient partners in numerical aspects. Wider literature on the topic shows there are appropriate methods to involve non-experts in discussions about statistical models and numbers, 6 although this is a controversial topic. 7 Either way, communication, in particular about numerical aspects of trials, needs to improve to enable meaningful PPI in trials, and this has been known for almost a decade 5 and it is a key priority for future PPI research according to multiple stakeholders.…”

Section: Discussionmentioning

confidence: 99%

“… 5 At the same time, involving patients and the public in the statistical and health economics aspects of trials can result in enriching data interpretation and better research, with more robust and implementable evidence. 6 7 …”

Section: Introductionmentioning

confidence: 99%

Patient and public involvement in numerical aspects of trials: a mixed methods theory-informed survey of trialists’ current practices, barriers and facilitators

2021

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ObjectiveWe aimed to find out if trialists involve patients and the public in numerical aspects of trials, how and what are the barriers and facilitators to doing it.DesignWe developed a survey based on the Theoretical Domains Framework. We used a mixed methods approach to analyse the data and to identify important domains.SettingOnline survey targeting UK-based trial units.ParticipantsStakeholders working in UK-based clinical trials, 18 years old or over, understand English and agree to take part in the study.Outcome measuresTrialists’ behaviour of involving patients and the public in numerical aspects of trials and its determinants.ResultsWe included 187 respondents. Majority were female (70%), trial managers (67%) and involved public and patient partners in numerical aspects of trials (60%). We found lack of knowledge, trialists’ perception of public and patient partners’ skills, capabilities and motivations, scarce resources, lack of reinforcement, and lack of guidance were barriers to involving public and patient partners in numerical aspects of trials. Positive beliefs about consequences were an incentive to doing it.ConclusionsMore training, guidance and funding can help trialists involve patient and public partners in numerical aspects, although they were uncertain about public and patient partners’ motivation to be involved. Future research should focus on identifying public and patient partners’ motivations and develop strategies to improve the communication of numerical aspects.

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“…2,6 Patients and members of the public can also bring different perspectives from those who are conducting the research, such as a lay person's perspective, as well as the lived experience of the condition or caring for someone with the condition. 5 Patient and public involvement (PPI) may be used to aid development of trial material for patients which may have an impact in the recruitment and retention of trial participants, 4,6,7 as well as the consent process. 8 Stakeholder involvement is inclusive participation of all stakeholders in health-care research, from the grass roots student population to clinicians and from the public to patient.…”

Section: Backg Rou N Dmentioning

confidence: 99%

Stakeholder involvement in the development of trial material for a clinical trial

Rix

Branney

Breen

et al. 2020

Health Expectations

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Background Stakeholder involvement includes not just patients and public, but also those delivering treatment for example clinicians and students. Each stakeholder brings unique experiences to the process. The aim of this stakeholder exercise was to explore readability and understanding of the trial material for the future trial to be conducted by the authors: Biomechanical Effects of Manual Therapy—A Feasibility Study. Design Volunteers from identified stakeholder groups were provided with trial material which included the information sheet, consent form, questionnaires and home management booklet. They provided feedback on content (readability, understanding) and style (font, layout). An additional document was provided with genres of pictures to choose the most appropriate style to be used in the booklet. Readability formulas were used to calculate reading age before and after feedback to objectively measure ease of reading. Results The public group provided a layperson's perspective to clarify the information sheet for patients, whereas practitioner and intern groups indicated where information could be clarified. The reading age of all documentation decreased following feedback; however, templated sections of the documentation did not. The majority (87%) of volunteers chose coloured classic cartoons for the booklet. Conclusion This process highlighted the importance of involving different stakeholder groups in the development of research materials as each group made a unique contribution. Readability and understanding of the trial material were improved, feeding back into the consent process contributing towards fully informed consent. Patient or Public Contribution Public helped develop materials for a future trial but not with manuscript preparation.

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Public and patient involvement in quantitative health research: A statistical perspective

Cited by 20 publications

References 29 publications

Health Economists on Involving Patients in Modeling: Potential Benefits, Harms, and Variables of Interest

Health Economists on Involving Patients in Modeling: Potential Benefits, Harms, and Variables of Interest

Patient and public involvement in numerical aspects of trials: a mixed methods theory-informed survey of trialists’ current practices, barriers and facilitators

Stakeholder involvement in the development of trial material for a clinical trial

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