Perceptions of precision health research participation: a cognitive interview study

Through a cognitive interview study with diverse South Carolina communities, researchers refined the PECAN survey instrument by addressing challenges related to complex wording, cultural relevance, and recall demands, thereby enhancing its clarity and effectiveness for studying precision health research participation.

The Gist

Imagine you are a chef trying to create a new, complex recipe for a diverse group of people. You want the dish to be nutritious and delicious for everyone, but you've never cooked for this specific group before. If you just serve the food without asking for feedback, you might find out too late that the salt is too high, the spices are confusing, or the texture is just wrong.

This paper is about a team of researchers (the chefs) who were designing a very important "recipe" (a survey) to understand why people from different backgrounds in South Carolina might be hesitant to join medical research. Their goal was to study Precision Health—a fancy way of saying "tailoring medicine to your unique genetic and lifestyle makeup."

Here is the story of how they fixed their recipe, explained simply:

1. The Problem: A Recipe That Was Too Spicy

The researchers wrote a draft survey full of scientific words and complex questions. They thought it was perfect. But they realized that if they just handed this survey to the community, people might get confused, scared, or annoyed, and the answers wouldn't be honest.

It was like serving a dish with ingredients people had never heard of, written in a language they didn't speak. They needed to test it first.

2. The Solution: The "Taste Test" (Cognitive Interviews)

Instead of just guessing, the researchers invited four community members to a café for a "taste test." In research terms, this is called a Cognitive Interview.

Think of this as a focus group where the participants didn't just fill out the survey; they talked through it out loud. They were asked:

• "What does this word mean to you?"
• "Does this question make you feel uncomfortable?"
• "How would you ask this differently?"

It was like having a group of friends taste your soup and telling you, "Hey, this tastes like soap," or "I don't know what this vegetable is, can you tell me more?"

3. The Big Discoveries: What the "Tasters" Said

The community members gave the researchers some very honest, crucial feedback. Here are the main things they found:

• The "Scary" Words: The survey used words like "biological sample" and "biospecimen." To the participants, these sounded like the researchers were going to take their blood or organs right then and there.

  • The Fix: The researchers added a big, friendly disclaimer at the top: "Don't worry! We aren't asking for any samples today. We just want to know what you think about these terms." It was like putting a sign on the door saying, "No surgery required."

• The "Targeted" Feeling: Some questions sounded like, "I am willing to participate." The participants felt this was too pushy, like a salesperson trying to trick them into signing a contract.

  • The Fix: They changed the language to be more hypothetical and less personal, like asking, "Would you consider participating?" It shifted the vibe from a sales pitch to a friendly conversation.

• The "Off-Topic" Questions: The survey asked about political views and specific religious beliefs. The participants felt this was invasive and irrelevant to their health, like a doctor asking about your favorite sports team during a check-up.

  • The Fix: They cut those questions out entirely.

• The "Confusing" Options: The survey asked two separate questions about where people got their news (media vs. news). The participants said, "Why are you asking me the same thing twice? Just ask me once and give me a list of options like TV, Internet, or Radio."

  • The Fix: They merged the questions and made it a simple checklist.

4. The Result: A Dish Everyone Can Enjoy

By listening to the community, the researchers didn't just fix a few typos; they completely redesigned the survey to be culturally sensitive and easy to understand.

They realized that for research to work, especially with communities that have been hurt by the medical system in the past, you have to build trust. You have to show that you respect their time, their privacy, and their culture.

The Takeaway

This paper teaches us a simple but powerful lesson: You cannot design a tool for people without asking them what they need.

Just like a good chef listens to their diners, good scientists must listen to their communities. By using these "taste tests" (cognitive interviews), the researchers turned a confusing, scary survey into a clear, welcoming invitation. This ensures that when they finally ask the big questions, they get honest answers that can actually help improve health for everyone.

Technical Summary

1. Problem Statement

The study addresses the critical challenge of low participation rates in precision health research among racial and ethnic minority groups, particularly African Americans in South Carolina. Despite the potential of precision health to reduce disparities in chronic diseases (e.g., lupus) through personalized therapies, historical mistrust, systemic barriers, and a lack of culturally sensitive research tools hinder engagement.

• Specific Gap: There is a lack of validated survey instruments designed to assess beliefs, attitudes, and barriers regarding precision health research participation. Existing tools often fail to account for the specific cultural contexts, health literacy levels, and historical traumas (e.g., regarding biospecimen collection) of diverse populations.
• Objective: The Precision rEsearCh pArticipatioN (PECAN) study aimed to develop a survey instrument to understand factors influencing participation. However, the initial draft required validation to ensure clarity, cultural relevance, and validity before large-scale deployment.

2. Methodology

The researchers employed a qualitative cognitive interviewing approach to refine the PECAN survey instrument.

• Study Design: A guided group discussion using concurrent verbal probing, based on the "How To" Guide to Cognitive Interviewing by Gordon B. Willis.
• Participants: Four community members (two men, two women; ages 30–70) from the Sea Island Families Project (SIFP) Citizen Advisory Committee (CAC). These participants were African American, actively engaged in community health advocacy, and represented the Gullah African American population of rural South Carolina.
• Procedure:
  • Duration: Approximately 90 minutes.
  • Process: Participants reviewed a draft questionnaire while interviewers used scripted and spontaneous probes (e.g., "Is this clear?", "How would you rephrase this?", "What makes you uncomfortable?").
  • Focus Areas: Clarity of terminology, cultural relevance, sensitivity of topics (genetics, biospecimens, politics), and survey flow.
  • Analysis: Four researchers independently took notes, identified recurring themes (e.g., "difficulty understanding," "ambiguous wording"), and reached a consensus on necessary revisions through iterative discussion.
• Ethical Considerations: The study was classified as a quality improvement project by the MUSC IRB, exempting it from formal IRB review. Consent was implied through participation.

3. Key Contributions

The paper contributes a methodological framework for adapting precision health surveys for underrepresented communities and provides specific, actionable revisions to a research instrument.

• Methodological Validation: Demonstrates the efficacy of cognitive interviewing in identifying subtle linguistic and cultural barriers that quantitative pilot testing might miss.
• Instrument Refinement: Transformed a generic survey into a culturally responsive tool by addressing specific community concerns regarding:
  • Terminology: Simplifying complex medical jargon.
  • Trust: Addressing fears of coercion and specimen collection.
  • Structure: Reducing cognitive load through merging redundant items.
• Community-Centric Design: Shifted the survey focus from researcher-centric language to participant-centric phrasing (e.g., changing "researchers should be from the community" to "researchers should be from your community").

4. Results

The cognitive interviews identified four primary categories of issues, leading to specific survey modifications:

A. Clarity and Simplification of Language

• Issue: Direct phrasing (e.g., "I am willing to undergo genetic testing") felt invasive and targeted. Terms like "insurance status" were ambiguous.
• Revision: Language was depersonalized (e.g., "I would be willing..."). "Insurance status" was changed to "insurance coverage." Open-ended questions about media sources were merged into a single question with specific checkboxes (TV, Internet, etc.) to reduce respondent burden.

B. Context and Reassurance

• Issue: Definitions of "biological sample" and "biospecimen" at the start of the survey induced fear that participants would be asked to provide physical samples, triggering historical mistrust.
• Revision: A disclaimer was added to the introduction explicitly stating: "We will not be asking you for specimen samples and only want to ascertain your understanding of these definitions." Reminders about anonymity were added to sections regarding genetic testing and insurance.

C. Cultural and Community Representation

• Issue: Phrasing regarding community representation was vague. Questions about spiritual/religious beliefs and political affiliation were deemed confusing, offensive, or irrelevant to research participation.
• Revision: Phrasing was localized ("your community"). Questions regarding political affiliation and specific spiritual beliefs were omitted entirely to avoid alienating participants.

D. Question Structuring and Scope

• Issue: Redundancy between questions regarding drug affordability and insurance impacts. The scope of health determinants was too narrow.
• Revision: Redundant items were merged or removed. The survey was expanded to include "occupation/job/profession" as a determinant of health, acknowledging its impact on health outcomes beyond income and insurance.

Table 1 Summary of Changes:

Original Item	Identified Issue	Revised Action
"I am willing to participate..."	Felt targeted/coercive	Depersonalized to "I would be willing..."
"Biological sample" definitions	Induced fear of specimen collection	Added disclaimer: "No specimens will be requested."
"Where do you get media/news?"	Two separate open-ended questions	Merged into one with multiple-choice options.
"Political affiliation" influence	Offensive/irrelevant	Omitted.
"Researchers from community"	Too vague	Changed to "Researchers from your community."

5. Significance

• Enhanced Data Validity: By resolving ambiguity and cultural disconnects, the revised survey is expected to yield higher quality, more accurate data regarding the true perceptions of precision health research.
• Trust Building: The explicit addressing of fears regarding biospecimens and anonymity helps mitigate historical mistrust, a critical step for engaging African American communities in biomedical research.
• Scalability: The methodology provides a blueprint for other researchers developing precision health tools for diverse populations, emphasizing that "one-size-fits-all" surveys are insufficient.
• Future Directions: The authors note that while cognitive interviews improved the instrument, future phases will involve statistical validation (reliability/consistency) and the potential integration of digital technologies (adaptive surveys) to further reduce cognitive load and improve accessibility.

In conclusion, the study underscores that participant feedback is not merely a formality but a critical engineering step in developing inclusive, effective, and ethically sound research instruments for precision health.