Participant in Research Experience Survey - West of England, 2023 to 2024

2021 to 2022

1,340

585

2022 to 2023

1,539

1,023

2023 to 2024

2,478

3,301

2020 to 2021

1,126

5%

2021 to 2022

1,925

7%

2022 to 2023 (Including ALSPAC)

2,562

8%

2022 to 2023 (Excluding ALSPAC)

1,764

5%

2023 to 2024 (Including ALSPAC)

5,779

16%

2023 to 2024 (Excluding ALSPAC)

1,434

4%

2020 to 2021

1,126

0

2021 to 2022

1,897

28

2022 to 2023

2,482

80

2023 to 2024

5,674

105

Public Health

4,390

Cardiovascular Disease

251

Cancer

213

Infection

185

Primary Care

176

Respiratory Disorders

127

Reproductive Health and Childbirth

86

Anaesthesia, Perioperative Medicine and Pain Management

78

Mental Health

42

Children

30

Diabetes

28

Stroke

27

Metabolic and Endocrine Disorders

27

Musculoskeletal Disorders

25

Dementias and Neurodegeneration

24

Renal Disorders

22

16-25

0.34%

26-35

5.25%

36-45

4.18%

46-55

7.46%

56-65

23.88%

66-75

25.54%

76-85

28.73%

86+

4.62%

Less than 3 months

41%

At least 3 months but less than 1 year

23%

At least 1 year but less than 3 years

17%

3 years or longer

19%

Yes

67%

No

33%

The person taking part in the research

92%

The person taking part in the research with help from someone else

4%

Someone else on behalf of the person taking part in the research

4%

Female

55%

Male

45%

Yes

99.73%

No

0.27%

Asian/ Asian British/ Indian

0.64%

1.75%

Asian/ Asian British/ Pakistani

0.26%

0.58%

Asian/ Asian British/ Bangladeshi

0%

0.31%

Asian/ Asian British/ Chinese

0.51%

0.60%

Asian/ Asian British/ Any other Asian background

0.38%

1.00%

Black/ African/ Caribbean/ Black British/ African

0.32%

1.32%

Black/ African/ Caribbean/ Black British/ Caribbean

0.19%

0.55%

Black/ African/ Caribbean/ Black British/ Any other Black/ African Caribbean background

0%

0.28%

Mixed/ Multiple Ethnic groups/ White and Black Caribbean

0.13%

0.88%

Mixed/ Multiple Ethnic groups/ White and Black African

0.06%

0.33%

Mixed/ Multiple Ethnic groups/ White and Asian

0.51%

0.74%

Mixed/ Multiple Ethnic groups/ Any other mixed/Multiple ethnic backgrounds

0.26%

0.65%

White/ English/ Welsh/ Scottish/ Northern Irish/ British

91.74%

83.83%

White/ Irish

1.22%

0.64%

White/ Gypsy or Irish Traveller

0.19%

0.11%

White/ Any other White background

3.46%

5.42%

Other

0.13%

1.01%

Research delivery staff

Research delivery staff

Contributing to improving healthcare

Good communication

Good communication

Contributing to improving healthcare

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 between teams, receiving incorrect information, information about what was required, information about expenses, design of communication

192

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

64

Appointments:

Location, method, delays and waiting times, more time during appointments, flexibility over appointment times, issues with appointments, reminders

48

Travel:

Less travel less for appointments, free or better parking and travel options, better travel information

22

Study related:

Wanting the study to be longer, being in the control arm, side effects

19

Consent:

When people were approached about taking part in research, wanting more time to think about participating

10

Refreshments

10

Knowledge and experience:

Feeling like staff didn’t have the knowledge to answer questions or use required equipment. Comments under this section also relate to negative participant experiences relating to treatment from staff

8

Communication with other participants

5

Payments and recognition:

Wanting payment or to receive a greater payment

3

The information that I received before taking part prepared me

94%

94%

93%

I feel I have been kept updated about this research

82%

80%

72%

I know how I will receive the results of this research

78%

76%

77%

I know how to contact someone from the research team if I have any questions or concerns

89%

86%

84%

I feel research staff have valued my taking part in this research study

94%

93%

92%

Research staff have always treated me with courtesy and respect

97%

95%

95%

I would consider taking part in research again

93%

91%

91%

26-35

25.60%

36-45

0.07%

46-55

2.37%

56-65

47.06%

66-75

24.11%

76-85

0.69%

86+

0.08%

Less than 3 months

1%

At least 3 months but less than 1 year

1%

At least one year but less than 3 years

1%

3 years or longer

97%

Yes

67%

No

33%

The person taking part in the research

98%

The person taking part in the research with help from someone else

1%

Someone else on behalf of the person taking part in the research

1%

Female

69%

Male

31%

Yes

99.48%

No

0.52%

Asian/ Asian British/ Indian

0.36%

1.75%

Asian/ Asian British/ Pakistani

0%

0.58%

Asian/ Asian British/ Bangladeshi

0.05%

0.31%

Asian/ Asian British/ Chinese

0.18%

0.60%

Asian/ Asian British/ Any other Asian background

0.02%

1.00%

Black/ African/ Caribbean/ Black British/ African

0.02%

1.32%

Black/ African/ Caribbean/ Black British/ Caribbean

0.32%

0.55%

Black/ African/ Caribbean/ Black British/ Any other Black/ African Caribbean background

0.07%

0.28%

Mixed/ Multiple Ethnic groups/ White and Black Caribbean

0.38%

0.88%

Mixed/ Multiple Ethnic groups/ White and Black African

0.11%

0.33%

Mixed/ Multiple Ethnic groups/ White and Asian

0.61%

0.74%

Mixed/ Multiple Ethnic groups/ Any other mixed/ Multiple ethnic backgrounds

0.45%

0.65%

White/ English/ Welsh/Scottish/ Northern Irish/British

93.71%

83.83%

White/ Irish

0.90%

0.64%

White/ Gypsy or Irish Traveller

0.05%

0.11%

White/ Any other White background

2.68%

5.42%

Other

0.90%

1.01%

Research delivery staff

Research delivery staff

Good communication

Good communication

Contributing to improving healthcare

Having a good experience

Participant communication:

Information about the study results/updates, general information about the study, personal results, more contact from the study team, receiving incorrect information, information about what was required, design of communication

321

Procedures and materials:

Issues with questionnaires, technical issues with apps/equipment, more tests

173

Appointments:

Location, delays and waiting times, more time during appointments, flexibility over appointment times

122

Travel:

Less travel less for appointments, free or better parking and travel options, better travel information

70

Knowledge and experience:

Feeling like staff didn’t have the knowledge to answer questions or use required equipment. Comments under this section also relate to negative participant experiences relating to treatment from staff

53

Refreshments

43

Payments and expenses:

Wanting payment or to receive more money, time it took to receive payments, method of recognition

14

Study related:

Wanting to be involved in participant involvement, being in the control arm, negative effects

3

Communication with other participants

3

The information that I received before taking part prepared me

93%

94%

93%

I feel I have been kept updated about this research

89%

80%

72%

I know how I will receive the results of this research

89%

76%

77%

I know how to contact someone from the research team if I have any questions or concerns

84%

86%

84%

I feel research staff have valued my taking part in this research study

96%

93%

92%

Research staff have always treated me with courtesy and respect

97%

95%

95%

I would consider taking part in research again

98%

91%

91%

0-6

62%

7-11

14%

12-15

24%

Less than three months

56%

At least three months but less than one year

21%

At least one year but less than three years

14%

Three years or longer

9%

Yes

77%

No

23%

The child/young person

17%

Both the child/young person and the parent or carer together

16%

The parent or carer

67%

Research delivery staff

Research delivery staff

Good communication

Good communication

Contributing to improving healthcare

Gaining a feeling of hope

Procedures and materials:

Technical issues with apps/equipment, more explanation about tests or how to use equipment

11

Appointments:

Delays and waiting times, flexibility over appointment times, reminders

4

Participant communication:

Personal results, design

3

Study related:

Being in the control arm

2

Refreshments

2

The information received before taking part prepared me/my child

96%

95%

95%

I feel I have been kept updated about this research

93%

85%

75%

I know how I will receive the results of this research

69%

78%

82%

I know how to contact someone from the research team if I have any questions or concerns

90%

90%

86%

I feel research staff have valued my child taking part in this research study

98%

96%

91%

Research staff have always treated my child with courtesy and respect

100%

95%

94%

I would consider my child taking part in research again

96%

90%

89%

568 comments mentioned the research delivery staff

“Staff are always kind, helpful and attentive. They always try to make my long appointments relaxing and fun for me!”

“The research staff have all, and always, been a pleasure to deal with. I couldn't fault them. My appointments have always been conducted on time and been concise and succinct.”

“The research nurse provided extra support throughout my treatment. Initially it was a very stressful emotional time so was great to know someone was there if I needed any help or support.”

“The staff that I'm involved with always treat me as if I'm the most important person. Always polite and very helpful.”

383 comments related to good communication

“I knew what the research entailed and was kept fully informed throughout.”

“Each step was explained in advance so I knew what to expect.”

“Good information several times regarding the survey”

“I was kept well informed, and had numerous contact telephone numbers if I needed any advice or help.”

200 comments related to contributing to improving healthcare or feeling that their contribution was valued

“I enjoy contributing and the staff make me feel like this is a valuable opportunity”

“Knowing I am contributing to cancer research”

“It was clear that the research was valued and that by taking part it may help others in the future.”

“I was contributing to medical research”

195 comments said the research study was efficient and easy to take part in

“Quick. Part of routine assessment so didn’t take up any additional time.”

“Clear, well organised, straightforward.”

“It was made very unobtrusive for me to take part so was happy to do so.”

“Easy to include into my daily life”

187 comments mentioned gaining a feeling of hope

“Hope by taking part in the research will help future patients.”

“Knowing we will be helping future developments in the field of IVF”

“I felt I was taking part in something that would help people in the future”

“Gives me a sense of being helpful for future changes to the system and the way medication is prescribed.”

160 comments mentioned experiencing personal benefits

“The possibility of receiving a therapeutic vaccine for HPV. (A treatment that is not yet available elsewhere.)”

“I feel my health is being very well monitored while taking part in the research. Also there could be benefits if I am receiving the active drug rather than the placebo.”

“Great improvement in my condition.”

“I believe I have been seen more often than if I hadn't taken part in this research.”

82 comments related to having a good experience

“Pleasant experience”

“Very good and interesting”

“Great range of tasks”

24 comments said "everything" was positive

“Everything well done.”

“Everything was good about my experience and it was enjoyable.”

“All experiences so far very positive.”

13 comments related to consent and not feeling pressure to participate

“Did not feel I was put under any pressure, was my choice.”

“Being asked to take part and understanding what to expect during the trial. Also knowing that I can withdraw if I feel this is not right for me at any point.”

“I was given a sufficient period of time to make my decision without any undue pressure or influence. The trial was explained by more than one NHS member of staff with the relevant paperwork given.”

12 comments related to refreshments

“Food and drink that was available.”

“Well looked after with food, drink etc.”

7 comments related to where the research took place

“Pleasant environment in which tests take place.”

“Very calming waiting area and nice sofas and chairs.”

7 comments related to recognition and financial reimbursement

“My vouchers”

“A surprise gift of BP monitor at the end of the trial.”

5 comments related to travel

“The pre-trial info was very helpful and clear incl. parking info and reserved space (took the stress away)”

“The research was take place at my local surgery.”

More information about the study results and/or updates about how the study is progressing (65 comments)

“I would be interested to hear about the findings from the study, and perhaps information on how to find the study if it is published.”

“To be more informed of how the research was going.”

“Had I been kept informed about the trial. Found it had been closed in 2023 from other sources. Will I receive info when trial is wrapped up?”

More general information about the study (e.g. its aims and timescales) and/or the condition (46 comments)

“Some information about variables being tested and what exactly the research was intended to elucidate”

“Maybe a little more detail about the reasons for some of the questions.”

“Exactly how it will help further the study. What info I shall receive as a result What activities I will be involved in, or time commitment i will need to provide.”

Access to results of personal tests, including how these compare to others on the study (25 comments)

“More feedback on my progress over time and against a norm for my age.”

“I am very interested in my data and would appreciate being provided with a summary for personal use.”

“Perhaps being able to see my results at each stage”

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 (25 comments)

“I would not have been sure how to contact a member of staff involved if I had needed to. It would have been that little more reassuring to have a contact number supplied at the point of meeting.”

“Someone should have kept in touch”

“Possibly more contact from the research team”

Method of communication (9 comments)

“Just talking to someone. I know about the present shortage of people and why that is the case; I just wish that some sort of human interface could be restored.”

“The occasional face-to-face contact. I've had only telephone conversations since initially signing up to the trial.”

Receiving incorrect information, such as appointment requirements (8 comments)

“Was asked to bring back details & photo ID. These were never asked for.”

“Addressing the ambiguity of diary email telling me - wrongly - not to bother filling it in if nothing to report.”

Design of the communications materials, including information sheets and emails being lengthy and using medical jargon (6 comments)

“Some of the information requested would be better understood in layman's terms.”

“Reduce the paperwork/reading material - more consise so shorter if possible.”

Clearer information about potential side effects and recovery (3 comments)

“A leaflet with possible side effects, things to expect, things that you can't eat or drink (if any), tablets you can't take with these tablets (if any).”

“More explanation about the Omeprazole side effects. These I did not know until starting to take for the first few weeks having an odd symptom, read leaflet + NHS review on line, and found some information worrying, especially liver problems.”

Clearer information about expenses and how they can be claimed (2 comments)

“Slightly more information on the process for claiming expenses.”

“Money is not the topic - but more clarity on what / when amounts are paid. I would have done the study anyway.”

More information about what was required from the participant (2 comments)

“Knowing some of the questions likely to be asked so have time to find them out before so it doesn't take so long to answer what is needed.”

“Knowing that I'd be fasting before booking an appointment time.”

Issues around internal communication between staff and departments (1 comment)

“Informing other antenatal staff. My midwife only found out about the trial once I shared my information sheets”

Issues with questionnaires, such as feeling they were repetitive or too long (18 comments)

“Just that some of the questionnaires were quite long and didn't seem to be mobile friendly. When I tried to complete them on my phone, the page would skip or I couldn't see all columns.”

“Some of questions on survey were a bit tricky to answer on diet e.g. answer 'never' still had to add portion size so took me a few attempts”

Method/how procedures were done (9 comments)

“Smaller swallowable tablets instead of chewables”

“Things to read during tests where you have to be still”

Having functionality to enable feedback (8 comments)

“No freeform field in monthly feedback questions. Would have ben useful to add comments such as how often nasal spray I was given was used and why”

“The 'tick box' answers to some of the questions were too specific and did not always match my circumstances. In these cases a box for written elaboration of my answers would have been useful and given the researchers a more complete picture.”

Technical issues with apps/equipment (6 comments)

“A few issues with the app to complete the study diaries - not sending me through reminders to complete on certain days.”

“Had to provide urine sample - no receptacle initially apart from specimen pot! Difficult for female pts!”

Wanting more explanation about tests or how to use equipment (6 comments)

“More information about what an MRI is like - looks like, noise etc.”

“Clearer explanation of some tasks before completing them”

Design and accessibility (5 comments)

“The website to complete the surveys does not allow you to go back and check your previous reply if you realise it was the wrong response and wish to correct it.”

“This set of tests was designed on a PC. You should test it on an iMAC”

Would like to have done more tests (4 comments)

“More testing! I enjoyed it so much, I would love to do more.”

“More scans to help understand my well being”

Would like fewer tests (4 comments)

“I found that as more activities were added it took longer and longer to complete and I had no chance to improve my scores”

“Not do the memory + other tests!”

Issues related to medication after participating in research (4 comments)

“To have been allowed the drug regime at end of trial as it was very positive”

“Staying on the combination medication”

Wanting greater flexibility over appointment times (14 comments)

“Maybe more appointments out of working hours as for two I will need to go in work time and will need to work the time back.”

“Earlier appointment so less hungry!”

“Better management of the appointments - so they were on the same day so I missed less work for example.”

Location of the appointment and/or facilities (8 comments)

“Thought room was a little small for three people and sometimes four.”

“If the waiting room was warmer.”

Experiencing delays and waiting times (6 comments)

“Reduce wait time for getting medication from pharmacy”

“A bit of a wait for the appointment - 20 minutes late.”

More information about time commitments (6 comments)

“I had not appreciated how long procedure would take.”

“The day took a little longer than anticipated. 3 1/2 hours rather than 2 1/2.”

Method of appointment (5 comments)

“Doing it online”

“Having face to face with drs to ask questions”

Wanting more time during appointments (4 comments)

“A bit more time to look at and discuss the cardio vascular test results.”

“Bit more time.”

Wanting reminders (3 comments)

“Perhaps a reminder message beforehand.”

“If I had a choice of selecting date and time for the examination and a reminder of the appointment and the eating/drinking restrictions the day before.”

Issues with appointments, such as cancellations (2 comments)

“Not so many cancellations”

“The first few appointments were held in respiratory outpatients. On one occasion they failed to let the research nurse know I was there and I was left waiting.”

Free or better parking and travel options (12 comments)

“Parking at the hospital!”

“Not paying for car park!! With complicated machine.”

Wanting to travel less for appointments (8 comments)

“To be able to have the tests done more locally.”

“Less far to travel.”

“Experience was good but if I had lived geographically closer it would have been easier.”

Better travel information (2 comments)

“Only logistics knowing where best to park on a given day. The carparks have small, detailed and specific parking areas, getting fined by parking in the wrong area by accident is always a concern.”

“More information about parking at hospital.”

Being in the control arm (8 comments)

“If I had been part of the intervention group.”

“A different result to the randomisation”

Would have liked the study to be longer (6 comments)

“Longer study!”

“I would have liked the research to go on for longer.”

Experiencing negative side effects (5 comments)

“I felt sick during some periods of the research, this was counteracted by being prescribed medication.”

“If I didn't react to product”

903 comments mentioned the research delivery staff

“Very friendly staff, made the day fun and made sure I was looked after”

“From start to finish, everyone at children 90s staff are fantastic.”

“Staff are always excellent -professional and friendly.”

“From the moment I walked through the door,and by everyone I encountered,I was treated enthusiastically,kindly and with respect.”

340 comments related to good communication

“Everything was very well explained and they were very happy to answer any questions I had.”

“I was kept fully informed of all what was happening and everything was explained fully. It's been a very pleasing experience.”

“Very organised with emails to invite me. Easy to follow instructions emailed prior to attending clinic.”

231 comments related to having a good experience

“It was a positive experience and I enjoyed taking part.”

“It was an interesting experience which was beneficial to both my self and the study”

“An enjoyable experience.”

151 comments related to contributing to improving healthcare or feeling that their contribution was valued

“Felt valued. Felt contributing to an important study.”

“I felt that I was contributing to a very important piece of long-term medical research.”

“Feeling valued about taking part.”

151 comments said the research study was efficient and easy to take part in

“Easy to complete. Simply questions”

“Very well organised.”

“Very smoothly co-ordinated, good level of information.”

139 comments mentioned experiencing personal benefits

“It was good to have a health check”

“Being given information about my own health  It makes me think about myself and my family and the way we live”

“The clinics research has helped me get the help I need for my disability.”

109 comments mentioned gaining a feeling of hope

“I hope I am helping this and future generations”

“The study is a far seeing way of understanding child development across a wide range of families. The research will help future generations in ways as yet undiscovered.”

“The well-being of future generations”

89 comments related to refreshments

“Plenty of snacks & drinks if required”
“Great selection of refreshments to enjoy after fasting.”

“Loved the cafe where you could have a breakfast after fasting before a visit”

72 comments related to the environment and where the research took place

“The facility was clean, welcoming and friendly.”

“The facilities are always inviting and well kept”

“Additional needs are well-accomodated for to attend the clinic.”

47 comments related to consent and not feeling pressure to participate

“Everything was explained clearly and it was made clear I could say no at any point.”

“They made sure I was comfortable with everything and didn't pressure me into things that I didn't want to do.”

“Consent was made a priority.”

34 comments related to recognition, financial reimbursement and expenses

“It is also nice to receive a financial incentive to take part.”

“Having financial help means I can take part easily.”

32 comments related to travel

“The added bonus of availability of parking on site.”

“The taxi collecting me and dropping me home makes it a stress free journey, which I really value.”

31 comments said "everything" was positive

"Everything. absolutely everything”

“It was all positive”

Access to results of personal tests, including how these compare to others on the study (186 comments)

“To see my own progress and changes over the years”

“Direct feedback on personal results”

“Perhaps to understand where your results per test place you in the overall population.”

“Being able to receive all scan and test result information in a format with easy access.”

More general information about the study (73 comments)

“I think it would be interesting too know why certain tests were done for their research”

“Understanding more what they were researching and how this would help.”

“Would like to know more re the long-term research focus of ALSPAC.”

More information about the study results and/or updates about how the study is progressing (40 comments)

“To receive more study research findings.”

“Know more about what it informs”

“More clear outcomes from the research, ie a cure for something, or better lifestyle advice?”

Receiving incorrect information, such as appointment requirements (11 comments)

“The pre clinical information said I had to fast prior to attending , yet when I was in clinic , no one mentioned my need to fast . When I asked I was told that part of the research wasn’t available that day so I could eat!”
“Was sent incorrect info regarding fasting otherwise no other reccomedations”

More information about what was required from the participant (4 comments)

“One small thing - I was told in advance that the dates of my COVID vaccinations would be needed, so looked them up. I don't think I was told that you would need the type of vaccine, so had to access my GP records again at the appointment.”

“I was not aware that I required my full COVID.19 vaccination history.”

Wanting more contact from the study team and/or a single point of contact throughout (4 comments)

“More regular contact with the research teams.”

“Newsletters more often. I know it takes time to see trends and draw conclusions, but even a hello when I’m not being asked to fill in a survey would be nice.”

Wanting to receive fewer emails (1 comment)

“The constant trying to contact me before attending the clinic was unnecessary and excessive, yet when I had to cancel the visit at the last minute due to poor health, I heard nothing back.”

Issues around internal communication between staff and departments (1 comment)

“I feel there was a little confusion between different personel. One would say its okay to go and have a break/drink, then someone else would appear with the next activity lined up.”

Design of communications (1 comment)

“The clarity in the emails received. The format is often identical with the subject line not always linking to the content meaning you have re-read each email in detail to differentiate them.”

Technical issues with apps/equipment (57 comments)

“Some equipment was not working so one of the tests was not done.”

“The IT didn't work at various stages. Tech should be smoother! First scan machine didn't work. Tongue test didn't work at all. Researcher had to keep inputting my data manually.”

Would like to have done more tests (38 comments)

“Perhaps doing more tests or activities to learn additional facts about myself.”

“More clinics or questionares to be done”

Issues with questionnaires, such as feeling they were repetitive or too long (32 comments)

“Sometimes the questionnaires are rather long and there are some questions which are asked more than once but just with different wording.”

“The questionnaires are usually quite long. It might be easier to find the time if they were a bit shorter” 

Wanting more explanation about tests or how to use equipment (30 comments)

“Some of the instructions for the tasks could have been explained in a little more detail before doing them. Was sometimes a little confused.”

“More information beforehand about some tests - arrived and was unable to complete certain elements when they were explained.”

Method/how procedures were done (16 comments)

“A proper hearing test - the screening method used is not effective for anyone with tinnitus.”

“Not having to fast for quite so long!”

Location of the appointment and/or facilities (29 comments)

“I know it sounds daft but maybe pop posters (fun facts) where the participants are having to stay still for a while i.e. while getting the bone scan you have a light directly above, maybe attach one to the ceiling.”

“the temperature of the building fluctuated per room, kept having to put my jumper on and both off again.”

Experiencing delays and waiting times (18 comments)

“Time waiting around between tests.”

“I didn't expect to have to wait 20 minutes after my appointment time to be seen. After 2 hours I had to ask for refreshments, It was never offered to me.”

Wanting more time during appointments or more time for breaks (16 comments)

“Felt rushed in a few tasks and didn't get to complete all tasks as I usually would.”

“I would have liked a short break in the middle of the session. I had to ask and I felt awkward. It can be a lot for some people to continue straight for over 2 hours.”

Wanting greater flexibility over appointment times (14 comments)

“The option to book as a family would be great too as my husband is also part of the study as is my daughter so logistically would be easier to all book in for the same day”

“More appointment flexibility”

Booking of appointments (11 comments)

“Online booking system for days with lots of chance to book a long time ahead. We travel from North Yorkshire to do visits so like to tie in with other family visits.”

“Ability to reschedule as needed”

Issues with appointments (11 comments)

“Slightly chaotic organisation of the hearing test and one other test (which I don't think that I completed) with different people being tested at the same time. but generally a very good experience.”

“I wasn't able to do the dexa scan because it was occupied the whole time and stationary bike test because there was a data recording error.”

Wanting reminders (9 comments)

“ Sometimes with questionnaires a second nudge or request for me to complete as in busy life i can forget”

“Reminder day before to fast as I forgot.”

Wanting shorter appointment times (9 comments)

“Shorter - took too long”

“Not quite so long”

More information about time commitments (5 comments)

“It's gone on for longer than expected - warning of this would be good but not a huge deal!”

“I was told it would take 2 hours but it was actually closer to 3 hours - would have been good to be warned of that beforehand.”

Wanting to travel less for appointments (42 comments)

“Having a satellite centre where you could go for the focus sessions for people who live in the north of england”

“More local site to my home or a home visit”

Free or better parking and travel options (15 comments)

“Easier parking as car park was full.”

“Better transport links”

Better travel information (13 comments)

“Map of centre sent to my phone before my visit as I got lost”

“I don't think much else could be done to improve things, other than a map of the immediate vicinity of the test centre. We did take a wrong turning (too early) only to find the road closed off. My mistake, so not an issue, but a warning might have been useful. Not a big problem though.”

Wanting to receive payment or to receive more money (8 comments)

“More compensation/appreciation of time given.”

“I would like to be compensated more. I think that, over the years, data has become more and more valuable, and people are becoming more aware of the value of their own data and how this can be compromised. Therefore, I think that the amount of shopping voucher that is given should be of a higher amount, as the data we give is worth so much.”

Time it took to receive reimbursement/payments (3 comments)

“If I didn't have to pay for train tickets myself and wait several weeks for the money to be reimbursed”

“Payment of train in advance so I wasn't out of pocket for 1 month”

Method of recognition (3 comments)

“The cards which are given with some money on them are impossible to use.”

“If the voucher could be spent on stuff like electric + council tax that would be really helpful.”

Being in the control arm (1 comment)

“Not getting the placebo”

Being involved in participant involvement (1 comment)

“The only thing that I believe would make the study better is wider participant involvement in the decisions made about the research taking place. As a long term participant, I'd like to have a say on what I would like to see from the research in the future. It might not impact us as a generation, but could result in things being identified in our own children or generations to come. This could also have a massive impact on care provision in the future, saving money and time if illnesses or conditions can be identified in their infancy.”

Experiencing negative reactions (1 comment)

“I did have red pinch marks on my arm from the blood pressure tests which I’ve never had before”

45 comments mentioned the research delivery staff

“The staff that came to us and explained everything to us was very informative, caring and just generally lovely and put us at ease given the situation we were facing.”

“The staff here are all wonderful. Everyone we have encountered has been so friendly and helpful. Everyone is calm, confident and experienced. We feel very well looked after.”

“Very friendly approach. Clear explanations. Very much felt like we were treated as individuals, rather than 'participants in a study'.”

26 comments related to good communication

“You explained to me like a person of my age not a 2 year old and allowed me to fully understand the research and what I was doing/happening”

“Gave me lots of information.”

13 comments mentioned gaining a feeling of hope

“Great that this kind of research can help in future procedures such as his & may one day possibly find a cause for these heart conditions”

“That is could be beneficial in the future for other children with his conditions.”

11 comments said the research study was efficient and easy to take part in

“Any tests needed to be done were always done as a regular part of treatment, this has prevented a lot of stress for my daughter”

“It was non-intrusive. I didn't want my child to have to do anything extra (he gets distressed around unfamilar people & places). It had been explained when samples would be taken and I was happy to go ahead”

6 comments related to contributing to improving healthcare or feeling that their contribution was valued

“I am happy for my child to take part in the research if it will help others”

“Being able to help others”

5 comments related to consent and not feeling pressure to participate

“The team were kind and genuine, we never felt pressured. They were clear and patient, giving us time to process the information.”

“The research nurses were friendly and kind. They were happy to answer any questions we had, and very clearly stated that we were fine to stop participation at any point if we change our minds!”

5 comments mentioned experiencing personal benefits

“My son benefited from the vaccine.”

“Finding out weight + height. Skin assessments”

2 comments said "everything" was positive

“everything”

“All great”

1 comment related to having a good experience

“Interesting study to be a part of!”

1 comment related to recognition and financial reimbursement

“I can’t believe we get paid £75 to contribute to improving health!”

Technical issues with apps/equipment (6 comments)

“The app was glitchy and didn’t always work.”

“The app to collect data could be improved as it wasn’t always easy to complete the questions on there”

Wanting more explanation about tests or how to use equipment (5 comments)

“More advice prior to bracing on initial logistics of getting used to brace, E.g needing 2-3 T-shirts per day, needing to buy trousers etc a size bigger to go over brace. Physio/exercise advice given at start of bracing to counteract negative effects of wearing brace, e.g on core.”

“That bloods were being taken without being told normal bloods were being done”

Wanting greater flexibility over appointment times (1 comment)

“I'm not sure what could be done - but the time was stressful for getting cover at work - this is very difficult at short notice.”

Experiencing delays and waiting times (1 comment)

“Waiting to be discharged is always a slow process. Perhaps we just don't understand what the wait is for? Could something be done to improve this, freeing up the bed for someone else?”

Wanting reminders (1 comment)

“A reminder on the app to inform me if I’d filled out the e diary that month.”

Continuity of staff (1 comment)

“Continuity of doctor seen at research appointments.”

Access to results of personal tests, including how these compare to others on the study (2 comments)

“More frequent updates on research progression”

“We're sure we were probably told, but we can't recall much about what happens with the results of the study and whether and how they get communicated to us?”

Design of communications (1 comment)

“The only thing I would mention is the information leaflet at the beginning of the trial which gives you the information about the radar trial. For me this leaflet was far too long and far too detailed to read in a time where you’re already in a time of information overload and feel overwhelmed with everything going on. I know it is important to be told every little detail and to have it in writing, I don’t think that should change but I do think there should be a section of the leaflet which just has a very simplified pros and cons list or simplfiied information list with the most important things to know. The wording is quite confusing and it would be helpful to have something to help you make a decision about whether you want to take part in the trial or not.”