The report following this survey, carried out earlier this year by the Central Patient and Public Involvement & Engagement Team, is now available. CRN WM was one of three Local Clinical Research Networks (LCRNs) which developed and piloted the survey and returned the largest number of responses (318 of 597).

What we did and why

We ran a national pilot patient satisfaction survey about experience of clinical research to find out:

• What information came back from patients and what it told us

• How we could make best use of this information to improve the experience of research

• More about the best ways to gather information on patient experience in future

  How we did it

• We invited our LCRNs to take part using the same nationally agreed questions at a range of NHS sites in their area.

• Three LCRNs took part and we received responses from 597 patients and public.

• We carefully analysed the information from the survey to understand what it could tell us.

• We also asked the three participating LCRNs about their experience of running the survey.

  What we found out: some highlights

  The following themes also emerged as areas of experience important to patients¹:

1. Relationship with staff (respect, dignity, information, friendliness and professionalism).

2. Location (distance, travel, accessibility. suitability).

3. Time (time to decide whether to take part, respect for patients and carers time in study, flexibility of research appointments etc.).

4. Knowing results of study (study outcomes, potential impact, value of participation).

5. Information during study (extent, visibility, accessibility, relevance, timing, frequency and clarity).

6. Information about new studies² (visibility, accessibility, clarity relevance)

   Main recommendations

• Four specific questions used in the pilot are recommended for all future surveys because the responses provided information that we could act upon at a national level

• We recommend that future surveys use at least one key question within each of the six themes (above)

• Only use questions about respondents’ backgrounds (demographics) where there is already relevant data available (baseline) to compare it with, otherwise the time in collecting and collating this data is unlikely to be worthwhile

• When organising surveys, early planning with LCRN partner organisations is likely to save time later in the process and help realise local benefits

• Identify a survey lead for each NHS site to ensure everything is in place at the right time.

• Develop a survey strategy taking into account sample size etc. planned around the intended local use of the information collected

• Use the six themes (above) to identify NHS site level actions for Continuous Improvement

• Use the six themes (above) as areas for checking and assessing by clinical study teams, study support service, and specialties when opening a new clinical study

  Find out more

  For more details about the background, the questions and complete results of the Patient Experience Survey pilot email: crnppie@nihr.ac.uk or speak to Jackie Condliff Tel: 0151 282 4534

   

¹ Derived from a combination of analysed free text comments (both positive and negative) cross referenced with response scores to any related survey questions.

² This theme was derived from comments made by a small number of people using a free text comment field in the questionnaire. It is significant because the information was entirely spontaneous and concerns patient access to research, a strategic priority in the Clinical Research Network.