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Patient Experience

Sean Scott, Speciality Group Team Lead at North East, North Cumbria Clinical Research Network has conducted research into the patient experience of patients on clinical trials.

Read the debrief of Sean’s research below

Patient Experience Data Collection for Clinical Trials

The patient experience is an important aspect of healthcare. Not only does it provide key decision makers with the information needed to improve service, it also allows for a patient-centric approach. In other words, empowering patients to take an active role in the care they receive.


Patient Experience and Satisfaction is currently widely collected throughout NHS organisations in England. The main objectives are to increase standards and better the care received by patients. In some clinical trials patient and public involvement has focused on design of trials, becoming a front loaded process. Experience data of those who have actively participated is not so wide spread and rarely forms part of the trial data collection methods. There is currently a lack of evidence to suggest that patient experience data of involvement in research would be meaningful and useful to inform design and increase quality of future trials.

This study aimed to assess the opinions of research active clinicians with an association to the National Institute for Health Research: Clinical Research Network (NIHR: CRN), regarding the collection and perceived barriers to patient experience data, and gauge if such information would increase quality of trials, including recruitment and retention.

A 24 question cross-section quantitative survey was developed and disseminated online to assess opinions, perceptions and barriers to patient experience data. Consultants with in the NHS were invited to participant via census (all clinicians with an officially appointed job role in the NIHR: CRN were asked to complete the survey) sampling. Questions used a mix of dichotomous and Likert scale

answers. Assuming a relative tolerable error of 10%, a coefficient of variation (C) of a population of 5% and a pairwise correlation coefficient p (rho) of 0.5, the minimum response rate required was 58 participants.

The survey focused on four key themes:

  1. To what degree experience data is currently collected as part of clinical trials
  2. What clinicians’ opinions are regarding the usefulness of patient experience data
  3. What tools and/or methods would be best to collect and enable analysis of such data
  4. What the perceived barriers are to collecting the data from patients


Overall 98 questionnaires were completed from clinicians with a range of disease specialities and geographical locations.

50% of respondents claim to already ask patients about their experiences of which less than 40% follow on to record the data. However, 84% of respondents believe collection of experience data should be actively promoted in research trials (table 1) with 90% stating it would increase quality.

Graph 1

When considering the type of tools and methods that should be used, evidence suggests the most acceptable approaches are mixed method questions (Table 2) and satisfaction scales (table 3). Structured and semi-structured interviews were the least desirable.

Mixed Questionnaires - graph 2 Satisfaction Scales - graph 3

When asked about barriers, respondents expressed that time for staff (84% agree) was the main barrier alongside lack of knowledge to effectively interpret experience data (55% agree). Only 2.4% of respondents believed that patient reluctance to provide experiences was a barrier.

ANOVA and post hoc analysis concludes few significant results for co-variants (gender, length of service in research for clinicians and geographical area); although some statistical significance was evident between Local Clinical Research Networks and preferred methods of collection, in particular preference for structure and semi-structured interviews.


Clinicians are of the opinion that experience data is important and would increase the overall quality of research trials. This study suggests preferred collection tools and highlights a lack of knowledge to effectively analyse patient’s experiences. Furthermore barriers to experience data are due to complexities surrounding healthcare staff rather than patient’s reluctance.

Limitations and recommendations:  

This study had a number of limitations:

  1. Some degree of bias may be introduced as the population are already research active and in many cases will be designing their own research projects.
  2. The study is intentionally broad allowing for base level data rather than speciality specific data. Furthermore, the cross-sectional design allowed for an association to be demonstrated rather than casual relationships.
  3. The response rate could have been greater, allowing for a more powered study.

That being said the study has highlighted areas of further required research:

First: development of meaningful collection tools with explicit outcomes (alongside the assessment of burdens associated with each tool) for experience data is needed. Linked to this is a requirement for a standard approach to analysis with relevant training materials. Comparison of methods in actual trial settings would be beneficial.

Second: the nature of disease specialities is complex and it would be naïve to assume one tool would be effective for all. A concentrated and specific approach is also required. For instance, the collection of patient experience may need to be extended to careers and family members when the speciality area concerns mental health or degenerate disorders. Although it is envisioned a standard base of questions would be a good starting point, changes will be required where experience is specifically affected or altered by a particular disease or treatment setting (i.e.: critical care).