Online Patient Advisory Panel: reviewer form

Please complete this form electronically and return to xxxxxxxxxxxx by the agreed deadline.

We recommend that you read all the information we send you first, before completing the review.

Please have a common sense practical view by ensuring that your comments are meaningful, considered and informed by your experiences, and where appropriate challenging.

If you have any questions whilst reviewing this information please get in touch with xxx by email or call xxxxxxxxxxx.

Section 1: comments on the invite letter

Is the invite letter clearly written and easy to understand? (if you feel there are elements of the invite letter that could be improved, please elaborate on this in your answer).

Reviewer 1 – Yes.

Reviewer 2 – I think that the letter is written in a clearly and easy to understand way mostly, and the layout is also clear and easy to understand. The part of the letter that mentions types of vascular problems that you can have could be taken out. This is because there would be very few people that would know what they were and even less understands them. As the participants of the projects are healthy therefore don’t suffer from any vascular problems, they probably won’t know what the conditions are, so the names of some of the problems would just confuse them when they read it.

Reviewer 3 – Is the invite letter clearly written and easy to understand? (if you feel there are elements of the invite letter that could be improved, please elaborate on this in your answer) Yes it is clearly written and understandable. It could be improved by defining the terms: vascular, services and vascular insufficiency, and also by using less medical terminology i.e. talking about blood circulation problems rather than vascular conditions.

Reviewer 4 – The letter is fairly clearly written, although terms are used that might not be understood and I wasn’t entirely clear about the purpose of the research from the letter.

It isn’t clear what a ‘healthy’ adult is – whether other conditions are excluded or just vascular conditions.

Also, it would be better to have the explanation of what ‘vascular problems’ are right at the start as the term is used in the title and first paragraph without explanation.

What are vascular ‘services’? in-patient/out-patient and/or community services?

I was confused as to how ‘public’ views on ‘vascular’ services could be explored.

Many people won’t know what ‘aortic aneurysm’ or ‘venous insufficency’ mean and there’s no explanation of ‘health-care treatments’ and ‘interventions’ ‘patient-focused’ may not be a familiar term to everyone.

Reviewer 5 – Reasonably clear however a description of what ‘Vascular’ services are, is needed. I feel the word vascular itself is too technical.

Also most of paragraph 3 needs to come before paragraph 2.

Using the phrase general public is condescending ‘public’ is fine.

Reviewer 6 – The letter is brief and to the point. I did however keep rereading to try to understand why you want the opinion of people who do not need to access this service.

Reviewer 7 – I think you should make it clear at the very beginning that this is an interview study, not a clinical trial or experiment.

Reviewer 8 – It is a well written, clear, logical and just the right length. This is difficult as not sure how it could be improved. It’s the correct length and gets right to the point without any unnecesarry information. I would perhaps want to maybe know a bit more information on how this study would impact the health service.

Reviewer 9 – The letter is very clearly written in plain English and easy to understand.

Reviewer 10 – It is clear, but I suggest the actual details of the participant’s contribution – the short interview possibly face to face-could be set out in the first paragraph just to engage them more.

Reviewer 11 – I am very happy that the invite letter is clearly written and easy to understand. It clearly states that the research is aimed at improving patient-focused care: I feel this is important when embarking upon a research study.

Reviewer 12 – It is, but where are you getting their name from? I think that needs including as you are hinting at the fact you know something about them as you know they don’t have a vascular condition. I think people need to assured that their contribution can make a difference and explain the rationale for interviewing this group. A lot of people will think they cannot comment on a condition they have no experience of and a service they have never used. I certainly fall into this category.

Having read the invite letter, do you think it is a project that you would consider taking part in?

Reviewer 1 – Yes.

Reviewer 2 – I would consider it, because it doesn’t sound like it would inconvenience me too much, as the interview is mostly likely to take place over telephone, and would only take around 20–30 minutes.

Reviewer 3 – Yes. It appears to be a worthwhile project in which to become involved.

Reviewer 4 – Not without more explanation – and I was put off by the technical nature of both documents and the hypothetical scenario methodology.

Reviewer 5 – Yes.

Reviewer 6 – I see no reason not to take part, it’s a painless half an hour of my time; I would like to know why you’re seeking the opinions of the general public, people unaffected by the service, to help shape the service. Why should I be interested?

Reviewer 7 – Yes.

Reviewer 8 – I would be interested in taking part to see how the services are being changed and from the letter it would suggest that re-structuring of services are taking place, and the researchers and clinicians are asking the public what they want and what they would benefit from.

Reviewer 9 – It is a project I would take part in, although there is no direct benefit to myself, it may help others.

Reviewer 10 – Yes, if I were ‘healthy’!

Reviewer 11 – Yes, I would be keen to take part in this project.

Reviewer 12 – Not currently, I would want the information I have asked for above.

Section 2: comments on the participant information sheet

Does the document clearly describe and explain what will be involved for a patient who wants to participate in the research?

Reviewer 1 – “Participant interviews will most likely take place over the phone, but some interviews will be in person”: Better said in Invite Letter: “This will most likely be a telephone interview, but in some cases could be in person, either at a clinic or hospital”. Why one or the other, and why not knowing in advance?

Reviewer 2 – Yes, apart from the part that mentions about some of the interviews being in person at clinic or in hospital. Is there a reason why some people would be interviewed in person, or is that an option in case some people can’t do the interview by phone? This would need clarifying, as it may put some people off, as they would find it an inconvenience for them if they would have to go in in person.

Reviewer 3 – Yes I believe so. The use of the term “patient” here is inappropriate I think as it is addressed to “healthy volunteers”.

Reviewer 4 – No – I don’t think so. It still uses medical terms and I found the interview structure unclear.

Reviewer 5 – Not really I found it very confusing is it about quality of services or how far I would travel for the service. Also, as a patient, would I be interviewed over the phone or face to face – why the difference and who decides? Finally what is described in the structure doesn’t seem like an interview to me more like a ‘virtual or imaginary game’ and this does need more clarification.

Reviewer 6 – Very clear, easy to read. Describes the process well.

Reviewer 7 – Yes I think it’s very clear.

Reviewer 8 – This document very clearly starts with something I look out for. ‘No obligation to complete this study’ and ‘contact details can be found at the end’. It then follows into what is expected and a general example of how the interview will be conducted.

‘The disadvantages and risks involved are minimal’. – I’m not sure about this? How can a phone call be risky? This is too general, you need to outline the risk clearly or if no, which I suspect, say “there are no risks involved with the interview”.

Reviewer 9 – The document is very thorough and clear on what would be involved for the patient. There is no harm involved in the study and data storage and use was explain clearly and thoroughly.

Reviewer 10 – yes.

Reviewer 11 – The participant information sheet is very clearly written, and explains everything in good detail. I feel it also sets out the aims of the project very clearly.

Reviewer 12 – It is, but I think it could have more information in it as described for the invitation letter above. A description of the documents they will be sent would be useful, as it sounds offputting and bit much like hard work for no benefit. It would be useful to give some examples of where this type of research has been successful before.

Would you say that the document is written in a language that patients would understand, if not, what parts need changing?

Reviewer 1 – Definition of “Trade-off techniques”.

Reviewer 2 – It is mainly written in a language that the patients would understand, apart from one part. The paragraph that talks about the purpose of the study includes a list of vascular problems near the end, “peripheral arterial disease, aortic aneurysm, carotid arterial disease, varicose veins and venous insufficiency”. The inclusion of this is confusing and not really that necessary for the patient information sheet as they won’t understand what they’re reading.

Reviewer 3 – As in my response to Section 1 I would like to see the terms vascular, services, insufficiency, explained in more everyday language so as to be more readily understood by lay persons.

Reviewer 4 – The ‘purpose’ paragraph is unclear – if this is aimed at the public who don’t have vascular conditions they are unlikely to understand the medical terms used. Also – it still doesn’t explain how public views can be related to services they don’t access. Same points as above re letter – use of ‘healthy’ ‘patient-focused’, etc. I found the interview structure unclear – would I be asked entirely hypothetical questions? And how much explanation would there be of the health states and treatments?

Reviewer 5 – I think a lot of the language is quite technical such as ‘vascular health-care treatments’ and ‘rank them in order of how good or bad’ and ‘trade-off technique’ So they need descriptions in short and simple sentences. Also what do you mean by good or bad? This is very vague does it mean ‘is this painful or uncomfortable or embarrassing?’ I found a lot of the language quite patronising.

Reviewer 6 – Seems straightforward and easy to understand, clearly laid out. Being picky, I don’t like the use of ‘so therefore’ in the paragraph about disadvantages and risks. It’s clumsy and unnecessary to use both words.

Reviewer 7 – Yes but I think it might interest people more if you clarified what ‘vascular services’ comprises. Is it surgery, medicine and radiology? You might also consider encouraging potential subjects by telling them how their responses will make a difference.

Reviewer 8 – A very clear and logical information sheet. I cannot see anything that would need altering other than the disadvantages and risks involved section.

Reviewer 9 – Perhaps define ‘vascular’ slightly sooner. The document is understandable and clear. It is lengthy; however, I believe all the information is necessary.

Reviewer 10 – yes.

Reviewer 11 – I’m happy that it’s all written in a manner that’s easy to understand.

Reviewer 12 – The language is fine.

If you were given this document in clinic, would you have any questions for the researchers after reading this document?

Reviewer 1 – No.

Reviewer 2 – It says that they would be sent documents to prepare for the interview. Would they be long and time consuming to read, as this may not be possible for people who are very busy and wouldn’t have that much time to read long documents, therefore maybe making it an inconvenience and put them off.

Reviewer 3 – Yes as stated above.

Reviewer 4 – How can questions relating to hypothetical conditions and situations help to inform provision of a specific set of services for specific conditions? Wouldn’t it be better to ask those patients who already use them? Where are the locked cabinets for storing transcripts kept?

Reviewer 5 – I would be very worried about confidentiality I don’t find what has been written is reassuring in any way whatsoever. You need to be very specific about coding procedures and how all identifiers are removed. You need to state how researchers are monitored and what their access procedures are. Most patients are happy to give a researcher plenty of information about themselves just as long as they, the patient, is not identifiable.

Reviewer 6 – I still don’t understand why you want healthy volunteers with no interest in the service, I know what you want, and how it is carried out, and that it is part of a much larger study, but why would my opinion be valuable?

Reviewer 7 – I think the main question would be around the arrangements for the interview. Can it be done at the weekend or in the evening? If the subject has to travel are you facilitating this by paying their expenses? If I was sitting in a clinic waiting area reading this I’d like to know if the interview could be done during that visit to the hospital. This would benefit you because as they leave hospital they’ll forget all about the request to be involved.

Reviewer 8 – Is there a need for this study to decide where certain vascular services will be situated and structured in Sheffield because there will be some remodeling and moving? What do you expect to understand from the trade-off technique? How do my details, such as occupation, help the study? Why are you using healthy volunteers and not people with vascular disease states?

Reviewer 9 – I might wish for the researchers to elaborate on the meaning of ‘trade-off’ technique.

Reviewer 10 – yes, I would want to know more about ‘the broad structure of the interviews will be as follows:’ as I would be intrigued!

Reviewer 11 – If I have any other health conditions (i.e. not vascular), would this affect my eligibility to take part in the research? How many participants do you hope to interview? Do you have any links to the ‘larger research study’ you mention on the first page? Are there any factors that determine whether a phone interview or a face-to-face interview is conducted? Would I be able to read the transcript of my interview (after it’s been written up), such that I can confirm that it gives a true representative view of my interview?

Reviewer 12 – Why me? How can I possibly comment on something I know nothing about?

Section 3: do you have any other comments you would like to feedback to the researcher?

Reviewer 1 – None.

Reviewer 2 – None.

Reviewer 3 – None.

Reviewer 4 – None.

Reviewer 5 – You have decided that distance to the vascular service as a key factor, I would suggest most patients would consider local transport links and parking issues at a site are more important than distance

Reviewer 6 – None.

Reviewer 7 – None.

Reviewer 8 – None.

Reviewer 9 – The information looks thorough and clear.

Reviewer 10 – If you are going to tease the participant with the last section, either be more specific with what it entails, or leave it out altogether until the day. If you have any questions that you would like to ask the researcher regarding their project, please include them here.

Reviewer 11 – I think this is a really important project, especially given the aim is to assess current vascular treatment provision, and suggest improvements. I’d be very keen to be involved in the study. I wish you every success.

Reviewer 12 – None.