PPI Flashcards
What does PPI stand for?
Public and Patient Involvement
This is a description of how patients were involved in a research study. What level of involvement was this?
The patients were recruited from a charity supporting veteran soldiers and their families with Post-traumatic stress disorder. They were sent an electronic copy of the Patient Information Sheet and asked if they understood what the research study required participants to do.
Consult
Professor Yafe is the principle investigator (lead) of a randomised controlled trial exploring whether peanut allergy can be prevented
from ensuring babies eat products containing peanuts from 4 months of age onwards.
List 4 benefits could the PPI group bring to the project.
Improved Relevance: PPI ensures research focuses on questions that are truly important to patients, their families, and the broader community. This leads to findings that have greater real-world impact.
Enhanced Design: Participants bring valuable lived experience that helps researchers design studies that are practical, feasible, and address the needs and concerns of those taking part.
Better Recruitment: Collaborating with participants can improve recruitment strategies, leading to more diverse and representative samples that better reflect the target population.
Data Interpretation and Context: Participants help researchers understand the nuances of the collected data, ensuring findings are interpreted accurately and reflect real-world experiences.
Empowerment: PPI gives participants a voice and agency in shaping research that impacts their lives, leading to greater empowerment and self-advocacy.
Shepherd et al. (2019) talk about Evidence-biased care. What is EBC
Evidence-biased care occurs when evidence-based medicine (EBM) is applied too rigidly, overlooking individual patient needs and preferences.
What is Evidence Based Medicine?
EBM uses the best available scientific research to guide clinical decisions, aiming to improve safety and effectiveness while reducing harm.
How EBM Can Lead to Evidence-Biased Care:
Overreliance on Clinical Trials: Trials often have strict criteria, limiting their relevance to diverse real-world patients.
Focus on Averages: What works “on average” may not suit every individual.
Ignoring Patient Preferences: EBM can overlook personal goals, values, and lived experiences.
Neglecting Clinical Judgment: The art of medicine—experience, intuition, and relationships—is hard to quantify but essential.
What is the Risks of Evidence-Biased Care:
Poor fit between treatment and patient needs
Weakened patient-doctor trust
Reduced flexibility and innovation in complex cases
Which of the following groups of people are less likely to be recruited to adult research studies that take place in England?
- People who are black
- People who do not speak English as their first language
- Middle aged people
- People with a cognitive impairment
People who are black
People who do not speak English as their first language
People with a cognitive impairment
Many research studies would like their results to apply to the population, not just the sample who took part in the study. Making sure the sample represents the population well is important to support this.
What is the principle that is being described here?
Generalisability
Some people are more likely to volunteer to take part in PPI activities than others. Why is this a problem?
Research shows that while PPI groups add value, they often lack sufficient diversity.
Why Diversity Matters:
More Representative Findings: Diverse groups ensure research reflects the broader population, leading to more effective interventions.
Reduced Bias: Varied perspectives help uncover and address bias in study design and analysis.
Improved Generalisability: Inclusive research produces findings that apply more widely, improving real-world impact.
Challenges to Diversity:
Under-representation: Young people, ethnic minorities, people with disabilities, and those from lower-income backgrounds are often excluded.
Accessibility Barriers: Time, language, childcare, and transport can limit participation.
Power Imbalances: Unequal dynamics between researchers and participants may discourage open input.
Ways to Improve Diversity:
Targeted Recruitment: Proactively engaging underrepresented groups.
Training and Support: Equipping facilitators to create inclusive, culturally sensitive spaces.
Compensation: Offering payment and covering expenses to reduce barriers.
Flexible Engagement: Using online forums or tailored focus groups to broaden access.
What are some reasons that researchers would be reluctant to work with PPI groups?
- Fear of losing control over the question, design or methods of the project
- Worry that the PPI contributors will slow down the project too much
- Being uncertain about what activities the PPI contributors can become involved in.
- Concern about the cost.
