I'm new here - have recently been diagnosed with PMR. I've been doing a lot of online reading and I came across the research project at Gateshead, looking for people with PMR and/or GCA to volunteer to take part. I emailed saying I'd like to help and I was interested in finding out more. I received a reply today, and there are 2 things that are niggling me:
1. the email just said: "Please return questionnaire. Kind regards X". There was NO "Thank you for getting in touch", "Thank you for your interest". Now I know people are busy, but surely a little bit of courtesy wouldn't go amiss!
2. the attached questionnaire (Word doc) is protected, so you can't complete it online. It will have to be printed out, completed by hand, scanned, then emailed it back!
I noticed that the research project (started in May 2017) needs 500 volunteers, but as of April 2018 they only had 155 volunteers taking part - I wonder if that's partly due to the research project's lack of engagement with prospective volunteers?
Am I just a grumpy old woman? Is it the pred? Is it the PMR? Or am I just being unreasonable?!
(I will email them pointing out my concerns politely, but I'm just letting off steam first!)
Written by
MhairiP
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No you are not a grumpy woman. If you volunteer to help someone out on their research project, the least they can do is engage with you in a courteous, friendly manner. Good manners and appreciation make all the difference in the world. Let's hope they read this site...
Sorry for this long and unusually sober (for me) reply. But, regrettably, I have to agree with your comments about how this important survey was both launched and followed-up:
1. Yep, some 'Warming-up / Selling of the Importance & Ease of Completion' of the survey to potential Users might have encouraged more of Us PMR / GCA Lot to respond in the first place.
2. Like you (and how many others of us?), my survey 'form' eventually arrived electronically (as advised) - but in 'Read only' format (some weeks after my initial enquiry seemingly got Lost in Space and I moaned about it here). And then.. after much time wasted in trying to access / complete it / questioning my IT abilities, I had to e.mail Susan to bring it to her attention. After receiving an 'Away on Hols' automated return message (ok, everyone has to take a holiday..), I received a brief email from her today asking for my postal address to send the form to. Ohh.. back to square one after 3 months..?
3. (unless I'm mistaken..) There was no indication in the initial survey 'blurb' that it should (could only?) be printed, completed physically and then scanned and returned by e.mail or by post. As you suggest: how many of Us Lot have the resources, capabilities and / or patience to do this?
4. (Mmmm...): The scope and contextual 'rigour' of the survey questions seems VERY limited for either PMR or GCA Patients, and so I really can't see how much meaningful data can be extrapolated from the answers - regardless of how many are submitted.
I'm afraid that all of the above does make me wonder if the (reportedly here) poor response to the survey is less about Apathy on the part of potential Respondents and more about the various Administrative obstacles that have frustrated at least some of Us Lot in trying to complete and submit it? I, for one, had written it-off until today's reply from Susan.
And even then, I've 'gone-off-the-boil' in terms of motivation to take part after so many complications. If I'm honest, the entire process has been inefficient, complicated and lacking in relevance to me, even as a passionate Advocate and Supporter of all things to do with research into PMR and GCA. Sorry but, for better or worse, that's my experience as a Consumer of such things.
In fairness to Susan / those who initiated the survey (who I'm sure are doing their best), I appreciate the sentiments and motives behind this research. But with my Marketing & Promotion / Audience Engagement 'head' on (my professional / corporate work), I can't help feeling disappointed about and lacking in confidence in how the survey has been launched and managed - and also the validity of the conclusions it will come to.
Please understand (All!): I don't want to pour cold water on the research project and I appreciate that this response might ruffle some emotional feathers here with Friends in the PMR / GCA Community - and also with the clearly hard-working survey organisers, researchers and promoters at Gateshead.
But (to agree with you): Engagement is All - and I just fear that the project will fizzle-out and / or not make the Headlines in the PMRGCAuk and other Communities (e.g. PMRGCA North East) that we all deserve - and are waiting or hoping for.
Ok: I'll climb-off this precarious soap-box now! But I hope my comments will help somehow in keeping the Gateshead 'Your Ears' research project Alive and Relevant to all here.
As always, Answers and Suggestions on a Postcard please?
Having also been involved in marketing and market research, it makes me question the validity and reliability of any results this approach may comments up if the sampling and questionnaire process has missed a willing target audience. It's so important to get research on pmr that generates indications and results but it is most important that it is robust to make any impact on a medical fraternity with its large share of cynics who believe it's all in the mind. A half baked effort will confirm that's what we are, half baked whingers. To those doing the survey, credit and encouragement but do get some help.
In Canada here, the research projects/articles that I have been involved in and co-authored required approval by an Ethics Committee of the supporting educational institution (university/college). Participants received a complete explanation about the nature/purpose of the survey (measurement tool), who had access to the data set, how records were stored, and consent forms for participation involvement are signed. The organization administering the survey spends time with each participant answering questions and collecting the data that is then analyzed qualitatively or quantitatively, or both ways (mixed method), usually by academics who specialize in this area.
Sounds like there are some barriers in place that are making it difficult to collect the data (non-user friendly online survey). Too bad because I am very supportive of PMR/GCA research now that I've been diagnosed with PMR, and it seems to be conditions where research is somewhat lacking.
I do hope they end up with a decent sample size, and that the data collected will eventually provide insight into this often misunderstood AI condition.
I received an email yesterday saying I wasn’t needed which surprised me as I thought they hadn’t received their numbers. To defend academics, they are usually under resources on research and get so engrossed in their work, they don’t always get the niceties of communication!
Hi, I’m new to this invaluable site too and replied to the research callout last week being recently diagnosed with PMR, my reply of yesterday was neatly:
‘We don’t need any more PMR, thank you for your interest’
I guess quota has been met made me giggle though, non of us need any more PMR!
Being positive now I’m of the mind that this awful thing may have saved my life, my doctor put my aches & pains investigations on hold while anaemia was looked at within a month I’d had an op for bowl cancer back in April, I’m now recovered and clear.
I’m waiting to see a Rheumatologist in a couple of weeks, I’ve gone from a healthy 61 yr old to a slow, confused 62 yr old and am blaming the pred for the latter!
Ditto MhairiP! only difference is the age! 81 to 82! We need to believe it will go, but in the meantime Pred is the saviour. This too will pass (eventually)
I volunteered too but could not complete the form on the screen nor would it print out - maybe that was the fault of my pc - don't know. There was also no allowance made to add extra relevant information.
Me too, Maur. It seems a bit daft to send the survey electronically and for it then to be 'Read only' / not printable. Not your fault, and as mentioned earlier I can only guess how many of Us Lot lost interest at that stage.
I also agree - the option to add contextual (qualitative) information would add a lot of value to this survey...
This reply is not directed at MhairiP, but at the thread as a whole.
I did pick up the first post on this thread, but due to some illness, I have been unable to respond to it until now. I apologise for the delay in responding.
Once again, I am replying to all the comments made on this thread.
Firstly let me explain that I picked it up immediately and then made some enquiries.
As there are only two people involved in this survey - and working in the NHS, I thought I would explain in more detail how it is being done.
The NHS is doing this survey which was instigated by a Consultant Rheumatologist, Dr C Kelly. Dr Kelly now is only doing part-time with the NHS. He is retired and continuing his valuable work in other countries that need assistance. He has done voluntary work for many years.
The basic information was gathered by PMR&GCAuk North East Support, this was done by two volunteers (both in the 70's) and then collated and the analysis done by two people who had the skills - again volunteers who also have jobs and did this in their spare time. The result of was that it looked like there was a problem.
PMR&GCAuk NES, a tiny charity, said they could find £1,000 to assist in this being taken further.
NIHR England then agreed to take the study forward. However, as we all know, funds are limited. Only the NHS undertakes this type of research as there is no financial outcome at the end. Just knowledge.
So, one person was allocated to do the research 2 days per week, the rest of the the working week is doing work as a specialist rheumatology nurse.
I sent the link to this thread so they could read it and try and answer the complaints.
The salient points are as follows:
We have worked and are still working very hard for this study and replied to all who have asked to join the study. We are up to around 400 at present so most of the applicants must be getting the paper work and returning it with no problems.
We have a lot of PMR at present and NEED MORE GCA and PMR with GCA to balance the study.
We have just started to tell PMR patients that we will get in touch with them at a later date if we need more PMR patients before the end of the study which will be in December this year.
We suppose out of 400 there will be participants that have struggled with the questionnaire, it is and must be protected so people cannot change anything on the form.
We are aware that some computers are not compatible with the form, those people have been happy to send me their postal address to enable us to send paper work.
The ones with emails bouncing back we are not sure what that is about as we have an nhs.net account. Some do go into the junk mail but to date we have picked them up.
We do write a small message asking them to return questionnaire, and we are very busy and it can take time.
We understand where they are coming from but it does say ‘thank you’ in the paper work for taking part in the study.
End.
So, yes there have been difficulties as there often are in life. In a perfect world and with unlimited resources, those difficulties would be dealt with speedily.
I can assure you all, that after taking part in another research project run by 'big pharma' with lots of financial gain at the end, that money was thrown at us, including first class travel, insurance, five star hotels etc.
Yes hopefully the outcome will be a better understanding and probably an alteration in diagnosis and, most importantly raising awareness that problem do occur with ears etc............all this good for the endgame, which is cause and once that is crackcd cure. It won't be in my lifetime, but it will happen.
So those of you who live in the UK, and have GCA only or GCA&PMR, you are still needed.
The email address is: susan.pugmire@nhs.net.
Some of you will recall, that the NHS internet system was hacked and all the email addresses had to be changed. That meant the first email address posted was changed and we tried to ensure that all our publications were covered with the new email address.
If we missed anyone, I apologise.
Finally, I find Libre Office (a free download) allows you to open and read most documents you receive.
jinasc - could you start a new thread with this please? And include the details for the study and who is eligible.
I just read a comment from someone with GCA who really should be participating - but she may not see this. And there are new people all the time of course.
It would be very useful if the survey could be emailed as an editable document - parts of the document could be made uneditable so the wording can't be changed, but more importantly, the parts of the document that we need to fill in could be editable. It could then be completed and emailed back without having to print it out. (It would probably be best done as an editable Acrobat PDF - most people have Acrobat Reader on their PCs/Macs now (it's a free download).)
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Calling all GCA patients in the USA....a research study.
