CRN West of England Participant in Research Experience Survey 2022-23 Report
Contents
You can read the full CRN West of England Participant in Research Experience Survey 2022/2023 Report below. The report is also available as a PDF. Download the CRN West of England Participant in Research Experience Survey 2022/2023 Report (PDF, 1.4MB).
Summary
The Participant in Research Experience Survey (PRES) is a way for those taking part in research to anonymously share feedback about their experience. This feedback helps us to improve research delivery and ensure the best possible experience is being provided.
The survey is delivered across all 15 regions of the National Institute for Health and Care Research (NIHR) Clinical Research Network (CRN). In the West of England, the survey is distributed to participants by research delivery staff and is administered by the Clinical Research Network West of England (CRN WE).
This report is the analysis of responses received from the beginning of April 2022 until the end of March 2023.
Responses showed that the majority of people taking part in research had a positive experience, with their interaction with research delivery colleagues being an essential part of this experience.
- In 2022/23, 84,477 participants across the West of England volunteered to take part in health and care research
- Participants in the region were recruited into a total of 643 studies.
- 2,619 people completed a survey; 2,537 responses to the adult survey and 82 responses to the children and young people survey.
How was the PRES delivered?
In the West of England participants can complete either an online or paper version. 4 different versions of the survey are available in both formats:
- Adult participants
- Participants aged 0-6 years old
- Participants aged 7-11 years old
- Participants aged 12-15 years old
In 2022/23, 40% of responses were received via the digital survey, an increase from 30% in 2021/22. In 2022/23, the size of the paper survey increased from A5 to A4. We have had feedback from research delivery teams that this increased size is less popular with participants. The increased number of digital responses could be due to it being easier to share e.g. by using QR code business cards and posters.
| Paper responses | Digital Responses | |
| 2021/22 | 1,339 | 585 |
| 2022/23 | 1,539 | 1,023 |
Please note: This chart show the breakdown of the number of reportable responses received, which differs to the total number of responses received.
Who responded?
During the reporting period, 2,619 people completed a PRES; this is made up of 2,537 responses to the adult survey and 82 responses to the children and young people (CYP) survey.
Responses were received from across 198 different studies, and from all 7 trusts in the region and 20 Primary Care sites. The number of Primary Care sites delivering PRES has increased significantly, from 4 sites in FY 21/22. This has been as a result of PRES being added as a measure to the Research Site Initiative (RSI) Funding Scheme, increased communication with sites around the importance of delivering PRES and increased support from the WE ReACH Direct Delivery Team.
As part of the survey, there is the space for participants to identify the site and study in which they participated. This information is important in providing specific feedback to study teams and delivery teams. Responses with this information are also shared with the national CRN team to be included in the overall network’s analysis. In 2022/23, 2,562 (98%) responses included this information; this is made up of 2,482 responses to the adult survey and 80 responses to the CYP survey. Over the past 3 years, the number of reportable PRES responses in the CRN West of England has been steadily increasing. In the region we have implemented a number of initiatives to ensure this information is included on responses, such as providing Partner Organisations with pre-printed labels to make the process easier for staff.
| Annual PRES responses | Proportion of Annual Network Total | |
| 2020/21 | 1,130 | 5% |
| 2021/22 | 1,925 | 7% |
| 2022/23 | 2,562 | 8% |
Our increase in PRES responses has also led to an increase in the region’s contribution to the overall network’s responses, from 5% in 2020/21 to 8% in 2022/23. This is likely due to increased awareness of the survey with research delivery staff in the region, due to work of the CRN and Partner Organisations, which has meant that more participants are being offered the opportunity to share their feedback.
| Adult | CYP | |
| 2020/21 | 1,126 | 80 |
| 2021/22 | 1,896 | 28 |
| 2022/23 | 2,482 | 0 |
Similarly, the number of PRES responses to the CYP survey has also increased in the West of England, from 1% in 2021/22 to 3% in 2022/23. This will be partly due to increased awareness of the survey, but may also be linked to HARMONIE, a large recruiting children’s study, being open in the region.
| Specialty | Responses |
| Public Health | 798 |
| Infection | 379 |
| Cancer | 283 |
| Respiratory Disorders | 270 |
| Cardiovascular Disease | 225 |
| Musculoskeletal Disorders | 116 |
| Reproductive Health and Childbirth | 100 |
| Primary Care | 100 |
| Anaesthesia, Perioperative Medicine and Pain Management | 70 |
| Renal Disorders | 59 |
| Dementias and Neurodegeneration | 46 |
| Diabetes | 21 |
Responses were received across 22 of 31 specialty areas. The chart above shows the specialties with over 20 responses. The large number of responses from public health studies is due to high recruitment from ALSPAC (Children of the 90s), a large-scale birth cohort study with 25,000 participants each year.
The most common age range of respondents is between 55-74 years old. More work needs to be done to ensure representation from a wider range of age groups, especially children and young people.
| Age | % |
| 0-6 | 1.87% |
| 7-11 | 0.34% |
| 12-15 | 0.91% |
| 16-24 | 0.65% |
| 25-34 | 12.70% |
| 35-44 | 6.71% |
| 45-54 | 8.01% |
| 55-64 | 27.68% |
| 65-74 | 25.35% |
| 75-84 | 13.04% |
| 85-97 | 2.74% |
Most surveys were completed by the person who was taking part in research (57.3%). For the majority of respondents it was the first research study they had taken part in (72.57%), with most reporting that they had been taking part in research for at least 3 months but less than 1 year (41.18%).
The majority of respondents identified as female (59%). An overwhelming majority identified as the sex they were registered at birth, with only 8 people reporting that their gender is not the same as the sex they were registered at birth.
| Who completed the survey? | % |
| The person taking part in the research | 57.30% |
| The person taking part in the research with someone else | 8.43% |
| Someone else on behalf of the person taking part in the research | 34.27% |
| Is this the first research study you have taken part in? | % |
| Yes | 72.57% |
| No | 27.43% |
| How long have you been taking part in this research study? | % |
| Less than 3 months | 15.69% |
| At least 3 months but less than 1 year | 41.18% |
| At least 1 year but less than 3 years | 37.25% |
| 3 years or longer | 5.88% |
Please note: the demographic data in the following tables was only collected from adult respondents.
| What sex were you registered at birth? | % |
| Female | 59% |
| Male | 41% |
| Is your gender the same as the sex you were registered at birth? | % |
| Yes | 99.67% |
| No | 0.36% |
The majority of respondents reported their ethnicity as White (90.77%). This is higher than is seen in the wider population of the West of England (83.83%). There was also a higher number of Irish people who completed the PRES (1.58%) compared to the wider population (0.64%).
For all other ethnic groups a lower number of participants completed the PRES compared to the wider population.
The population column shows demographic data for the West of England region as recorded in the 2021 Census. Ethnicity data for research participants is not routinely captured and so we cannot determine if our PRES respondents are representative of all those who participate in research. We are funding and leading initiatives to capture this data across all studies.
Please note: the demographic data in this table was only collected from adult respondents.
| Ethnic Group | % | Population | |
| Asian/Asian British | Indian | 0.73% | 1.75% |
| Pakistani | 0.50% | 0.58% | |
| Bangladeshi | 0.08% | 0.31% | |
| Chinese | 0.19% | 0.60% | |
| Any other Asian background | 0.27% | 1.00% | |
| Black/African/Caribbean/Black British | African | 0.12% | 1.32% |
| Caribbean | 0.27% | 0.55% | |
| Any other Black/African Caribbean background | 0.19% | 0.28% | |
| Mixed/Multiple Ethnic groups | White and Black Caribbean | 0.08% | 0.88% |
| White and Black African | 0.04% | 0.33% | |
| White and Asian | 0.12% | 0.74% | |
| Any other mixed/Multiple ethnic backgrounds | 0.46% | 0.65% | |
| White | English/Welsh/Scottish/Northern Irish/British | 90.77% | 83.83% |
| Irish | 1.58% | 0.64% | |
| Gypsy or Irish Traveller | 0.12% | 0.11% | |
| Any other White background | 3.81% | 5.42% | |
| Other | 0.12% | 1.01% | |
What was positive about your research experience?
1,837 (70%) respondents left a comment explaining what made their research experience positive. From these comments we identified the following themes
- 864 comments mentioned the research delivery staff
- 537 comments related to contributing to improving healthcare
- 457 comments related to good communication
- 272 comments said the research study was easy to take part in
- 241 comments related to having a good experience
- 203 comments mentioned experiencing personal benefits
- 48 comments said "everything" was positive
- 41 comments related to where the research took place
- 35 comments mentioned gaining a feeling of hope
- 27 comments related to financial reimbursement
- 19 comments related to travel
Examples of comments from each theme are shown in Appendix 1.
The same themes were identified in the 2021/22 PRES report, suggesting the positive aspects of taking part in research have remained the same.
Comments related to good communication have increased from 21% to 25%, suggesting that studies may have improved how they communicate with participants.
What would have made your research experience better?
603 respondents (23%) left a comment about what could have made their research experience better. This table shows the themes that we identified from these comments.
| Theme | Comments |
| Participant communication: Information about the study results/updates, general information about the study or condition, personal results, more contact from the study team, method of communication, information about side effects, internal communication, receiving incorrect information, information about what was required, information about expenses, design of communication, fewer emails |
310 |
| Procedures and materials: Issues with questionnaires, technical issues with apps/equipment, method of procedures, more explanation about tests or how to use equipment, more or fewer tests |
98 |
| Appointments: Location, method, delays and waiting times, more time during appointments, flexibility over appointment times, issues with appointments, reminders, shorter appointments, booking of appointments |
67 |
| Travel Less travel less for appointments, free or better parking, better travel information |
45 |
| COVID-19 Issues with travel/vaccine passports, restrictions, more information/updates, study interruptions, unblinding process |
28 |
| Payments and expenses Wanting payment or to receive more money, time it took to receive payments, method of recognition |
26 |
| Refreshments | 25 |
| Study related Wanting longer or shorter study, being in the control arm, side effects |
20 |
| Knowledge and experience When people were approached about taking part in research, feeling like staff didn’t have the knowledge to answer questions or use required equipment. Comments under this theme also relate to awareness of Equity, Diversity, and Inclusion |
20 |
| Communication with other participants | 2 |
Examples of comments are shown in Appendix 2.
Although fewer participants (23%) left comments about what would have made their experience better (compared to 32% in 2021/22), the themes identified are broadly the same as last year.
Whilst comments about participant communication remain the most common, these have decreased since last year (from 64% to 51%). This also aligns with an increase in positive comments around communication, indicating that studies have improved how they communicate with participants. There has also been a large decrease in the number of comments around appointments (from 27% to 11%), this is likely due to study teams being able to offer more flexibility around appointment times and methods.
Quantitative questions
Adult survey
This table shows the percentage of participants who responded positively to the quantitative questions in the survey. This means they responded to the question with either ‘Strongly Agree’ or ‘Agree’.
Green boxes indicate where the percentage has increased or stayed the same compared to the previous year. Orange boxes indicate where the percentage has decreased in comparison to the previous year. Responses to 3 questions have decreased compared to those received in 2021/22. All others remained the same or increased. The largest decrease is in relation to the question about whether participants know how to contact someone from the research team.
In comparison to the national average, responses to all quantitative questions in the adult survey compare favourably.
| Question | Year | National average for 22/23 | ||
| 20/21 | 21/22 | 22/23 | ||
| The information that I received before taking part prepared me | 96% | 95% | 94% | 93% |
| I feel I have been kept updated about this research | 81% | 82% | 82% | 71% |
| I know how I will receive the results of this research | 85% | 77% | 78% | 74% |
| I know how to contact someone from the research team if I have any questions or concerns | 95% | 93% | 89% | 85% |
| I feel research staff have valued my taking part in this research study | 95% | 94% | 94% | 91% |
| Research staff have always treated me with courtesy and respect | 98% | 97% | 97% | 95% |
| I would consider taking part in research again | 95% | 94% | 93% | 91% |
Children and Young People survey
This table shows the percentage of participants who responded positively to the quantitative questions in the survey. This means they responded to the question with either ‘Strongly Agree’ or ‘Agree’.
Green boxes indicate where the percentage has increased or stayed the same compared to the previous year. Orange boxes indicate where the percentage has decreased in comparison to the previous year. In comparison to the responses received in 2021/22, responses to all quantitative questions in the CYP survey have either seen a positive increase or stayed the same.
The majority also compare favourably to the national average, however responses to 3 questions are lower than the national average. The most significant difference is in relation to participants knowing how they will receive the results of the study, which is 18 percentage points lower than national average.
| Question | Year | National average for 22/23 | |
| 21/22 | 22/23 | ||
| The information received before taking part prepared me/my child | 96% | 96% | 97% |
| I feel I have been kept updated about this research | 86% | 93% | 75% |
| I know how I will receive the results of this research | 56% | 69% | 87% |
| I know how to contact someone from the research team if I have any questions or concerns | 82% | 90% | 90% |
| I feel research staff have valued my child taking part in this research study | 93% | 98% | 95% |
| Research staff have always treated my child with courtesy and respect | 100% | 100% | 96% |
| I would consider my child taking part in research again | 96% | 96% | 91% |
Recommendations
As we have seen in previous years, the responses received overwhelmingly demonstrate that the majority of participants in the West of England have a positive experience of taking part in research. The majority of our quantitative responses are above or in line with the national average, with most either positively increasing or remaining the same as the previous year.
There has been a increase in positive comments and a decrease in improvement comments around communication. There has also been a positive increase in some of the quantitative responses related to communication. Despite this, it remains the largest area of improvement identified through the survey.
Although only 3% of improvement comments related to staff knowledge and experience. A number of these related to participants feeling that staff had made unhelpful assumptions. It is really important that we listen to these comments, especially as we strive to make research inclusive and accessible for everyone.
As we endeavour to continually improve participants’ experiences of taking part in research, the feedback from the PRES is helpful in identifying potential areas of focus. Key recommendations from this year’s feedback include:
Communication
- Identify ways in which communication with participants can be improved, especially in relation to sharing the results of the study and providing regular updates.
- Explore ways of ensuring participants understand how to get in contact with the study team.
- Ensure information about location and access to appointment venues is clearly communicated, including information about transport, entry points and parking location/price.
Equity, Diversity, and Inclusion
- Improve awareness around Equity, Diversity, and Inclusion, to ensure participants feel welcome and respected whilst taking part in research.
- Making research materials inclusive, such as avoidance of medical jargon and providing large print and easy read versions where possible. Where this is not possible, ensuring a staff member is able to talk through materials.
- Consider if appointments could take place in community settings and at different times of the day to facilitate the participation of under-served communities
Next steps
The points highlighted in the report above will form the basis of discussions with participants and research staff about the areas that they feel are most important. It is important that both groups are involved in deciding on priority areas of focus. These areas will be used to form projects led by the CRN which aim to improve the participant experience.
Responses from the ongoing survey are regularly shared, including through a live dashboard, with study teams to enable real-time analysis and improvements to practice. This ensures participants’ experiences play a role in shaping how studies are delivered.
We are also already working on the following projects related to the participant experience:
Implicit bias workshop
We are leading the development of a new implicit bias workshop which is specifically designed for research delivery staff. The workshop will provide research delivery staff the opportunity to consider how implicit bias can be present in research practice, and identify a series of tools and strategies to acknowledge potential implicit biases when delivering research and to take action to manage their effect. The workshop has been developed with the input of research delivery staff and public contributors to ensure that it reflects what is most meaningful to both the research workforce and participants in research. We're aiming to pilot the workshop in Autumn 2023.
Public newsletter
We have launched a newsletter aimed at members of the public where we share participant stories, news about health and care research and opportunities to get involved. Although these stories won’t necessarily be about the study the participant is taking part in, they help to give a general understanding of research and the difference that participation makes. You can sign up to the newsletter via this form. Research delivery teams can also sign-post participants to sign up to the newsletter.
Training
We use PRES comments in traning courses as case studies and discussion topics. This helps research delivery staff reflect on the experiences of participants and the difference
that they can make.
Research Champions
We have recruited 10 Research Champions. These are members of the public who volunteer their time to spread the word about health and care research to the public and help healthcare staff understand more about the experiences of participants. This role also offers the opportunity for participants to meet others who have taken part in research, something several PRES respondents suggested they would like. We’re always looking for more people to join the team. If you’re interested in finding out more, please email our Public Engagement Team.
Community Engagement
We are working with Community Organisations and Community Champions to raise awareness of research and listen to the current perceptions of research. We share learnings from this work with research delivery staff, with the aim of sharing best practice and encouraging community engagement.
Research Scholars
Our Research Scholars are leading a project to evaluate differences in participant remuneration across a number of studies and how this affects who is able to take part in research. The findings from this work will be shared with other researchers with the aim of providing guidance on best practice.
Strategic Funding
We provide strategic funding to support research in new settings, sites and locations. This enables research teams to provide a greater choice of appointments to participants in locations that are closer and more convenient to them. Recent initiatves we've funded include helping services offer research 7 days a week.
If you have any questions or for further information about anything in this report, please contact our Public Engagement Team.
Appendix 1: What was positive about your research experience?
| Theme | Comments |
| Research delivery staff 864 comments (47%) mentioned the friendliness and professionalism of research delivery staff. |
“The staff are brilliant. No praise too high. No negatives, it was perfect!” “The research team have been absolutely lovely. They have made me feel very valued and have informed me every step of the way. The team made time to talk everything through.” “The people involved have been attentive, caring and happy to answer any questions or concerns I’ve had going through this process. I’ve found it very reassuring.” “Excellent professional contact from those running the study, before, during and after.” |
| Contribution: 537 comments (29%) expressed feeling that they were contributing to improving healthcare for others, or that they felt their contribution had been valued. |
“I have felt that I have contributed to the understanding of people with cancer. I hope that from this research others will be helped.” “Knowing that we were taking part in research that might benefit Parkinson’s sufferers. Quantifying the number of falls month on month where they occurred and how close to [the] next dopamine tablet the fall occurred.” “That my participation is appreciated and could help cardiac patients in the future.” |
| Communication: 457 comments (25%) related to good communication. This included feeling that the study has been explained well to them and that they were kept up to date. |
“The team have kept me informed and valued throughout the study, and have been easy to contact and quick to respond when I have any queries.” “Everything was explained in detail and the researchers were patient and courteous. It was a pleasant experience.” “Information was easy to understand with ample opportunity to ask questions. Email responses were prompt, polite and friendly. It’s been a steady process.” |
| Easy and well organised: 272 comments (15%) said they felt the research study was easy to take in part and/or well organised. |
“Questionnaire was not too long or difficult to complete.” “Very easy and important thing to do.” “Easy to participate as it was part of my routine care and treatment.” “Very organised and professional, texts and emails every day.” |
| Good experience: 241 comments (13%) related to having a good experience of taking part in research. |
“I felt useful. The whole experience was pleasant and painless. Would 100% recommend to anyone to get into medical trials.” “I love being part of the study. It is fun doing the different tasks. Interesting to see the scan pictures.” “Everything I took part in was very interesting.” |
| Personal benefits: 203 comments (11%) mentioned experiencing personal benefits from taking part in research. |
“I was able to have yearly mammograms for 10 years. This was very reassuring because my breast cancer was discovered during a routine mammogram. It was too small and deep seated to make a lump.” “Being in regular contact with MS specialists.” “My blood sugars are brilliant now my health has been monitored more closely and gained a lot more knowledge.” |
| Everything: 48 comments (3%) said "everything". |
"Everything!" "Every aspect of the research is positive" |
| Environment: 41 comments (2%) related to where the research took place. |
“It was a positive experience in comfortable surroundings and is beneficial to assist with research” “Calm and friendly environment” “The location was warm, well lit and clean with new and well maintained equipment. Overall good experience.” |
| Hope: 35 comments (2%) mentioned gaining a feeling of hope. |
“My son now has Parkinson’s and I hope what has been learnt may help him in the future.” “It makes me feel useful and hopeful for the next generations” |
| Financial reimbursement: 27 comments (1%) related to financial reimbursement. |
“I enjoy taking part, it’s not hard and it’s interesting. Plus you get a voucher and they reimburse for travel.” “The compensation voucher is high. It’s interesting/fun. I like contributing.” |
| Travel: 19 comments (1%) related to travel and transport. |
"Easy choices to make about whether I come by car/train/cycle - all seemed possible. Relaxed atmosphere." "Car parking. Friendly atmosphere." |
Appendix 2: What would have made your research experience better?
Communication
Participant communication was the most common issue that was highlighted, with 310 comments (51%) relating to this theme. This theme covered the following topics:
| Topic | Comments |
| More information about the study results and/or updates about how the study is progressing (112 comments) | “It would be nice to hear how the research is going, or what the results are once it’s concluded.” “Some sort of feedback on how the trial was progressing and what was being achieved. While I’m told about my own progress through regular clinic appointments with a consultant hematologist I’ve heard nothing at all from the [Study name] itself.” “Information as to when the study is likely to be finished and where could we read it. Or maybe a short summary of findings sent to all participants.” |
| More general information about the study (e.g. its aims and timescales) and/or the condition (62 comments) | “Maybe some sort of literature to explain a bit more about the research, what sort of activities/testing takes place and achievements of the research to date.” “Explaining what the desired outcomes of the survey are and the end goal” “Would be useful to have a deeper understanding of my condition” |
| Access to results of personal tests, including how these compare to others on the study (49 comments) | “To have a print out of personal results and how they compare to an average.” “Almost nothing but I’m nosy so would have liked to know more of my scores.” “Would have liked to be able to take copies of scans etc. home with me” |
| Wanting more contact from the study team, clearer information about how the study team can be contacted and/or a single point of contact throughout (29 comments) | “I think seeing and talking to someone on something like a six month basis would have been beneficial.” “Knowing someone is alway at the end of the phone if I should need help.” “Having the same research staff member throughout” |
| Method of communication (22 comments) | “Probably being able to meet the research team - everything was carried out online or on the phone.” “A bit more information in quick-to-read format.” “Printed copies of the scans or emailed them. Copy of blood pressure etc. details. Basically a copy of [everything]” |
| Issues around internal communication between staff and departments (6 comments) | “Clinic nurse could have been more informed on the study, as she didn’t know why bloods were being taken, or what to do with them after they were taken.” “A lack of integration between the clinical research team and the urology department meant the process of administering and progressing my treatment (particularly post operation) was disjointed.” |
| Clearer information about potential side effects and recovery (7 comments) | “Perhaps being made more aware of the [aftermath] of the treatment. Difficult I know to tell someone how much they are going to suffer. However, after my treatment, suffering at home, I felt a bit abandoned.” “I feel that the after-effects of the urological test were somewhat understated, both by the nurses involved and in the leaflet. I realise you don’t want to put people off, but equally they need to be prepared for what were in my case excruciating pains.” |
| Information sheets and emails being lengthy and using medical jargon (6 comments) | “Maybe to have the information sheet broken down into boxes than just a big sheet of writing” “Written communication via email and letters were not written in a way non medical people could easily understand” |
| Receiving incorrect information, such as wrong timings or appointment requirements (5 comments) | “Was asked to attend earlier but wasn’t actually seen until appointment time.” “I got the wrong invitation letter, so I fasted for 6 hours before my appointment in expectation of having a blood test but I didn’t need to. Staff [apologised] profusely when I spoke to them and allowed me time to eat something before we started.” |
| Clearer information about expenses and how they can be claimed (5 comments) | “Wasn’t too sure about claiming expenses, could have been a little clearer.” “Better/quicker communication re parking reimbursement when required” |
| More information about what was required from the participant (5 comments) | “To have known you needed the dates of birth of relatives.” “For the visits it would be really useful to have a list of what tests we are going to be doing when I get there as I’m never sure how long I have until the next test or what it is until I’m already in the room. I know it can change depending on availability but a general gist of when I’m going to have to bounce around or sit still for half an hour would be good.” |
| Receiving reminders about tasks that had already been done (2 comments) | “Not texting a reminder at 4pm when I’d already completed the survey” |
Procedures and materials
98 comments (16%) related to procedures and materials. This theme covered the following topics:
| Topic | Comments |
| Issues with questionnaires, such as feeling they were repetitive or too long (39 comments) | “A space on each page for your personal information and feedback. No 2 people have the same experience.” “Slightly repetitive answering the same questions every day, rather than “has anything changed?” but I guess it makes it easier to analyse data.” “I think some of the questions in the questionnaires are quite repetitive” |
| Technical issues with apps/equipment (33 comments) | “The machine was inherently noisy in operation. Whilst this was not a problem during the day, it did prove difficult at night in getting to sleep.” “A better study app. The study app was confusing, with sometimes incomplete / incorrect information, haphazard reminders to report symptoms.” “I had problems with my hearing test. The tablet I was given did not register a lot of my responses so I was told I had severe hearing problems even though I can hear perfectly well” |
| Method/how procedures were done e.g. being able to do tests before meetings or changes to how medication was supplied (15 comments) | “Being able to complete questionnaire on line before meeting to discuss. One section asked you to post questionnaire off, which then meant you had to complete it again at the face to face meeting” “I would like to have the [Aspirins] all in one go only the doctor would not [supply] them so I went to the chemist myself to buy them.” “Music during bike test.” |
| Would like to have done more tests (6 comments) | “I would have been happy to do more tests.” “More questionnaires and study activities” “More tests!” |
| Wanting more explanation about tests or how to use equipment (4 comments) | “More communication from scanners e.g. there was one scan that was particularly noisy and made me jump. Would have been nice to have some warning.” “Just minor things, on the 1st and 2nd time I had to wear the device I wasn’t given the instructions” |
| Would like fewer tests (1 comment) | “Not so many tests” |
Appointments
67 comments (11%) related to appointments. This theme covered the following topics:
| Topic | Comments |
| Location of the appointment and/or facilities (18 comments) | “Felt a bit self-conscious answering sensitive questions with people coming in and out of computer room” “Not putting the vaccine centre on top of a hill - selection bias towards healthy people.” “I’m hard of hearing and found it very difficult to hear the receptionists behind their screen.” |
| Method of appointment e.g. preference for face-to-face (11 comments) | “The opportunity to discuss some of my online answers with a real person some of the time.” “Maybe the occasional personal contact.” “Sometimes I had to come in to do things face-to-face which could have been done on the phone/online...for example signing forms.” |
| Wanting more time during appointments (8 comments) | “Perhaps more time to discuss it - my operation was imminent so there wasn’t a lot of time.” “More time to sit and chat” “To spend more time with the patients to fully explain the information and to make sure its retained” |
| Experiencing delays and waiting times (8 comments) | “The times being better. I often had to wait quite a long time. In particular my second vaccination I was forgotten about and left in an area waiting as staff left for the day who had been managing me and then there was a poor handover. Most of my appointments were late making it hard to attend during” “Less waiting time at the hospital” “Better time keeping from the Doctor.” |
| Issues with appointments, such as late notice cancellations (7 comments) | “The second bedside visit was scheduled but didn’t happen so I was left unsure what was happening.” “It was a bit difficult when appointments got cancelled last minute. It can’t be helped but had to keep rearranging [shifts].” “Some of the supplies I was given expired but this was resolved quickly” |
| Wanting greater flexibility over appointment times (6 comments) | “It was really great. If I had to give any constructive feedback was the appointments later in the study were not very flexible, they only gave you a window of one or two days. If this could be opened to a week I think more people could make them. I totally understand for the receipt of vaccinations they have to have a certain number of days between them.” “Possibly appointment times 0700-0830 or 1800-2000 to fit better around work, although I was always able to arrange a convenient time and I recognise researchers have home lives too!” |
| Wanting reminders (4 comments) | “Email reminders about the next appointment would have been useful” “More notice when visits were due.” |
| Wanting shorter appointments (3 comments) | “Taken less time” “Nothing, sometimes took a bit of time.” |
| Booking of appointments (2 comments) | “Not having to make the appointment so many months in advance. But being full appointments must be good for you.” “Local test centres and the ability to book online where possible.” |
Travel
45 comments (7%) related to travel. This theme covered the following topics:
| Topic | Comments |
| Wanting to travel less for appointments (21 comments) | “My research experience would be better if my local NHS trust is included in it so that I would not need to travel far to attend treatment and review.” “Closer location to my home address” |
| Free or better parking (17 comments) | “Parking can be a problem and a worry at times to keep on time” “Free parking when I had to attend for research. But otherwise nothing.” “Better parking facilities or more accessible venue rather than in the centre of a busy city where parking is limited. (Was offered parking but knew access was a bit [tricky], so was dropped off).” |
| Better travel information (7 comments) | “A map showing exactly where the building entrance is as the postcode gives a vague location.” “Parking sometimes not clear in location on some visits.” “Better info about the parking and where to go (on the first visits especially).” |
COVID-19
28 comments (5%) related to COVID-19. This theme covered the following topics:
| Topics | Comments |
| Issues with travel/vaccine passports (9 comments) | “More information about the impact of not having an approved covid vaccine (although appreciate this was difficult to predict in early stages).” “More support when I was trying to sort my traveling options” |
| COVID-19 restrictions e.g. wearing masks, reduced face-to-face appointments (7 comment) | “Covid not happening. Didn’t get to see team for several years. Spoke to consultant/reg on phone. Was really glad my experience prior to covid had given me confidence with my treatment.” “COVID was a big impact so haven’t seen anyone regarding how I was face to face.” |
| More information/updates as the situation changed (6 comments) | “It was inevitable perhaps that the study would change as more information was discovered about Covid, but it did feel sometimes that “the goalposts” were moving. Perhaps more information about why the changes were taking place would have made the process clearer.” |
| Study interruptions (4 comments) | “Two years of the covid pandemic have interrupted ‘normal service’ but telephone interviews have been used. Looking forward to reading the research outcomes.” “I feel that perhaps with covid about, the amount of time spent doing tests was [disrupted]” |
| Issues with the unblinding process (2 comments) | “I sadly had to be unblinded due to needing to travel. While the process itself was simple, it was hard and confusing to get a course of vaccines after. Letters that I [thought] would go to my GP ended up with me with no clear instructions. At the start, it wasn’t known what travel arrangements would be. I was really sad to have to drop out.” |
Payments and expenses
26 comments (4%) related to payments and expenses. This theme covered the following topics:
| Topic | Comments |
| Wanting to receive payment or to receive more money (16 comments) | “Getting paid for my time. I don’t mind doing research for free, but I did give up my time so some payment would be nice.” “Help with travelling and car parking expenses from the outset of the trial.” “More money for participants” |
| Time it took to receive reimbursement/payments (5 comments) | “Claiming mileage back/parking charges etc. Was slow - in the end I didn’t bother.” “Very poor at paying expenses, badly organised process.” |
| Method of recognition (5 comments) | “Unsure really, some kind of discount for the IVF cycle would have been very appreciated, I’m sure you would get more takers/more interest.” “I would have liked the opportunity to tick a box saying my expenses can be donated to a [charity]” |
Refreshments
25 comments (4%) related refreshments:
- "Offer of tea/coffee at the end."
- "Sandwich selection"
Knowledge and experience
20 comments (3%) related to staff knowledge and experience. This theme included comments about when people were approached about taking part in research and feeling like staff didn’t have the knowledge to answer questions or use required equipment. Comments under this theme also relate to awareness of Equity, Diversity, and Inclusion, such as using correct pronouns and avoiding heteronormative questioning.
- “Better/any education in staff of asking for pronouns, not assuming gender when signposting to the toilet. More training around accessibility (both physical and neuro-diversity), especially when booking accommodation. I requested an accessible accommodation and there were several steps into the property and no grab rails/ lack of steps in the bathroom.”
- “Waiting till I was a bit better, as I was more concerned with being ill. (My worst illness ever)”
- “Some staffs lack of ability to use required equipment, not sure if due to equipment poor, connectivity poor or staff ability, but frustrating as a participant not being able to complete"
- “On numerous occasions, I have been asked questions that are framed in a heteronormative way, and that do not consider that people may not be in a hetereosexual relationship. I have been offended by this insensitive wording and have had to explain my sexuality due to these assumptions. I do not mind being asked if I am using contraception but was not asked in a sensitive manner that allows for different sexualities or gender identities. Not all staff asked me in this way.”
Study related
20 comments (3%) related to the study. This theme covered the following topics:
| Topic | Comments |
| Would have liked the study to be longer or to take part in other studies (8 comments) | “More involvement as I would have been happy to come back and do additional visits and appointments” “Opportunity to be in more trials” “On going access to research, but understand very difficult to do.” |
| Being in the control arm (7 comments) | “I was a bit dismayed to be assigned to the control group but realise that this contribution was valuable too!” “I was put into the category of just maintaining 3 yearly mammograms...this seems pointless. An additional scan at, say 18 months, would have seemed beneficial. It seems pointless, for me, being part of the study as I gain absolutely nothing.” |
| Experiencing negative side effects (4 comments) | “Less side effects” |
| Would have liked the study to be shorter (1 comment) | “Faster I.E not taking 12 years to complete” |
Communication with other participants
2 comments mentioned that they would like to meet or talk with others taking part in the study.
- “Some engagement with other participants from my age group (I’m curious about them).”
- “Reading other people’s feedback = who already took part.”