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Optimising the Participant in Research Experience Checklist

 

Contents

8,507 research participants completed the Participant in Research Experience Survey during 2018/19. Their feedback and comments are a valuable insight into the patient experience of taking part in a study and five key areas of focus have been identified to bring to the attention of research professionals. The following checklist summarises these areas and is designed to be a helpful resource that can apply to a range of types of study and site environments. It could help inform the focus of patient and public involvement in research design and delivery. 

Five key themes

The five main topic areas that were raised by participants who completed the survey were:

1. Research staff

2. Information

3. Motivation

4. Organisation

5. Environment

Use of tips

The top tips can be used as a checklist in many situations by research teams, site teams and supporting staff. For example: 

  • Study design
  • Patient information
  • Budget planning
  • Study roll out
  • Site selection
  • Site set up
  • Research staff training
  • Recruitment strategy
  • Study management
  • Site monitoring
  • Study closure

Recommendations and insight

 

RecommendationsInsightWe found that:
Ensure site research staff are supported and have sufficient time allocated to build excellent working relationships with patients taking part in the study.  The relationship with research staff is absolutely key to the experience of study participants.

What was most appreciated was staff's: 

  • friendliness
  • professionalism
  • knowledge
  • approachability
  • helpfulness
  • respectfulness
  • informativeness
  • responsiveness
  • appreciativeness
Ensure the right information is available in the right place at the right time as participants proceed through the study. 

Having good timely information is important to people feeling engaged in and valued as participants in a study. Consider methods such as: 

  • verbal
  • written
  • online
  • messaging
  • video
  • responsive (to questions)

The types of information important to participants were: 

  • quality of pre-consent information (written and verbal)
  • practical timely information about the process: appointments, what to expect, where to be, when and how
  • timely updates about the progress of the study
  • general information about the health condition
  • getting personal information from tests, etc
  • information about the study results
Actively appreciate the motivation of patients for joining a study and be prepared to explain health issues. People participate in studies for a range of individual reasons. Understanding a person’s motivation for participating can help you to help them feel fully engaged.

In order of frequency of mentions in participant feedback, motivations were: 

  • altruism
  • medical monitoring
  • improving condition
  • learning about condition
  • interest
Carefully consider participant’s pathway through consenting and starting a study to subsequent study ‘visits’ in the way the study and sites are organised.  People’s time, access, costs, etc. are important to them and should be respected. Walkthroughs by patient representatives before starting site recruitment
proper, help identify difficulties sooner rather than later.

This includes: 

  • waiting time in clinic
  • appointment coordination frequency and length of time (design)
  • expenses and how and when incurred and paid
  • burden of travel and parking
  • flexibility of appointment times
  • location proximity/convenience
  • disabled access (e.g. visual impairment, wheelchair access, etc)
Carefully consider the effects of the environment participants will be moving through.  The general environment will affect how a participant feels about the study. 
  • Ambience of onsite environment - e.g. availability of refreshments, noisy/quiet, busy/calm, and attitude of others in the general environment is important