Bespoke study - we need input from cyclists!

I am writing on behalf of the Bespoke team, based at Barts Health NHS. We are about to start a study which will look at the circumstances surrounding accidents and the severity of injuries sustained by cyclists attending emergency departments, and explore how well patients recover from their injuries. However, we need cyclists to get involved by telling us what is important to them and what would be important areas to focus on in the study. We are hosting an event for cyclists on the 7th of October 2014 at 6pm (see http://goo.gl/R8UcnG for more details and to register). The event is free but if you are attending, you need to register, as there are limited spaces. see further details about the study on http://goo.gl/BpPNIg.
The Bespoke team.

Sub'd.
Interested in this.
Reckon I'll attend.

But you don't need to duplicate your thread in all the subforums that are appropriate.

Not being hit by cars is important to me. I find it helps reduce the severity of my cycling injuries.

Sorry about the multiple posts we hadn't participated in the forums here before.

WjPrince, it would be great to see you there. The event is ticketed due for capacity reasons so book your free ticket early.

hippy the not being hit by cars is pretty important to us too, they do tend to leave a mark!

We were more thinking about in the event of an injury, what are some of the things that are most important to you?

Is it how long it takes to get back to work, riding or playing sport?
Do you want us to look at the length of time people have pain after their accidents?
Is loss of earnings something we should look at or damage to bicycles and knock on costs?

Research needs to reflect the wants/needs of the population it is investigating. We are setting out some of the clinical outcomes, but these don't always give a true picture.

Anyway: feel free to ask questions, make suggestions and check out the website, there are some questionnaires there on the study document page that we would love some feedback on if you can't make the meeting.

We will keep checking back on this thread for a few the next few days but we you can also send us a message on twitter @bsp0ke

Registered a place @bespokestudy Cheers.
One question on registration was whether I had had an accident.I answered no, I've never an accident but have had 2 crashes, neither of which was accidental.

@Bespokestudy do you want survivors from gnarly near death shit to come along?

@skydancer great that you are able to make the event. We look forward to chatting with you there.

@_Leon everyone is welcome just make sure to book your ticket http://goo.gl/R8UcnG.

Did you see the article about the project in the Evening Standard?

1 Attachment

Well, I went to this.

Thoughts

The project majored on the fact that data on cycling accidents and cycling safety only really begins when an injured cyclist presents at a hospital. So the information available to found research on is largely fatalities and injuries worthy of going to the ozzy.
The research purports to seek a finer grain of information and majored on getting information on all the minor incidents that could have been bad but weren't, where no one reported it to the police or went to the ozzy.
This was stated as the primary motivation.

The study is split into two component parts.
1 - An app encouraging cyclists to report near misses and minor skirmishes on the bike. This is to address the mass of data on cycling activity that is never captured.
2 - A research study IN the hospital to capture a greater level of detail on the circumstances surrounding cycle accidents from the injured parties admitted.

We spent almost ALL the session talking about number 2.
To me, number 2 is a pretty straight forward and well established methodology in medical research.

Number 1 however has the potential to give HUGE insight, but the app is finished and no user involvement in its development was mentioned.
It strikes me that the success of the app hinges on the user uptake, yet there was no discussion of the promotion, dissemination or marketing of the product.
The app can be as awesome as you want, but if no-one knows about it and thinks to pull their phone out of their pocket shortly after they have had an off then it is about as much use as Anne Franks drumkit.

Other thoughts

• The stated aim was to put cyclists at the heart of the research where we shape the study. But the reality was us telling researcher whether their ideas were any good.
  
• No mention of extracting all the rich near miss and minor accident data out of the RoadSafe database.
  
• Cycling advocacy needs to be taken out of the hands of white men with grey beards.
  

This sounds a little like the research methodology is a bit shonky.

1 - An app encouraging cyclists to report near misses and minor skirmishes on the bike. This is to address the mass of data on cycling activity that is never captured.

MET Roadsafe?

Please report dangerous drivers thread?

Forum rider down thread?

This sort of anecdotal data exists, if they care to look for it.

How about some feedback from @Bespokestudy? Or was this just an arms length enquiry.

Certainly did.

Their intentions are good.
Their aims are grand.

I can't help but feel that the expertise in the group would be more effective if they scaled back just a little and worked a bit more effectively towards a smaller goal.

Cycling advocacy needs to be taken out of the hands of white men with grey beards.

You mean Charlie?
(he does a great job!)

ha!
I know Charlie does excellent work
Not aimed at anyone in particular, it just struck me that the assembled room was pretty far from being representative of the packs of cyclists you could observe in ASLs every morning.

The app/website is here: https://www.mysociety.org/2014/10/07/collideoscope-collating-cycle-accident-data/ . Apparently uses the same engine as the fillthathole people.

Bit of a long reply

TLDR: Thanks, some good points that we will look into. We recognise we may have mis-weighted the meeting. We need the critics as well as those who already think we are on the right tracks so come and join the public representative group and help make it better. This was only the start of the conversation not the end of it.

Hi @WjPrince Thanks for your feedback. Our invitation on this site and elsewhere said:

“We are about to start a study which will look at the circumstances
surrounding accidents and the severity of injuries sustained by
cyclists attending emergency departments, and explore how well
patients recover from their injuries. However, we need cyclists to get
involved by telling us what is important to them and what would be
important areas to focus on in the study.”

From your report I think we mostly achieved this. The well established methodology that you discuss is well established and much of it will be used. We also need to reflect the changing face of research. This is that if the population being studied doesn’t input into the design of studies we can’t hope to provide the answers to questions that are important to them.

Neil and Ben the designers who put the collideosco.pe together did ask at the end for feedback on the design. They also discussed the fine balance between gathering specific data and making the data capture form too long. If you have feedback on the design of the collideosco.pe web app please email us @ bespoke {[at]} bartshealth . nhs .uk and we will feed back to them.

The app has started to receive a good amount of coverage and was featured on the ITN news at the same time as the meeting. We are working with other organisations to continue to spread the word.
We also want to continue to work with other cycling groups and stakeholders and both have been invited to work with us and advise us. We were pretty clear on our lack of agenda in setting out to set up a study like bespoke and that continues to be the case.
The work for bespoke has happened in our own time because our jobs are funded to work on other projects in NHS roles. This was the first public consultation event, of this kind, that our team has been involved in. As a result we have learnt a lot from the process and feedback like this is valued.

Other studies typically consult small groups (6-8) and use that as their consultation. We very much wanted to make it more open and not restrict the numbers who could attend. 120 signed up for the meeting about 60% attended.

In response to some of your other points:

“· The stated aim was to put cyclists at the heart of the research
where we shape the study. But the reality was us telling researcher
whether their ideas were any good.”

We had to come up with a way of having a meaningful feedback with up to 120 people in a room, with limited time and no resources. This was challenging and we thought unstructured discussion would have been unproductive. We were cognisant that not everyone would be confident to talk openly. The method we chose hopefully allowed everyone to express their view. Those who did voice opinions were encouraged and similarly evaluated by using the same methods to evaluate our starting points. We will work to include those ideas which the cyclists present felt strongly about.

We recognise that we perhaps weighted this section too much on the hospital side – as always hindsight is 20:20. This is an aspect we can try to develop further with those who volunteer to get involved in the on-going public group to support and advise us. Perhaps @WjPrince you would be interested to join this? If you email us I can arrange a time to call and discuss what this would entail.

“· No mention of extracting all the rich near miss and minor accident
data out of the RoadSafe database.”

We would have welcomed this suggestion at the meeting and will look into this. Thanks. For clarity are you talking about the Met roadsafe database that @TW refers to?

“· Cycling advocacy needs to be taken out of the hands of white men
with grey beards.”

Not one beard in the team and advocacy is still very much in the hands of organisations like CTC and LCC which we are not seeking to oust frankly they are brilliant at it and it is not within our remit.

@TW The road safe database is owned by the Met and by its nature probably biases the data to situations where other road users are involved/there is some degree of criminality? It also lacks fine location data. We will approach the Met and ask whether they have a way of exporting this data in a way that will allow it to be similarly mapped.

As for the forum links there are currently 267 pages of unstructured, human readable data. To evaluate this is a huge task and is open to bias from the interpretation.

However It would be great if we could work with the forum to include a stickied post in that thread/sidebar for reporting injuries. If anyone could point us in the right direction for this please do.

We are still open for applications from people to join our smaller public representation group. We are not looking for “yes men/women” and would welcome those who want to work with us to make bespoke better.

This was only the start of the conversation not the end of it.

Well, I went to this.

Thanks for posting this up, really comprehensive. I've been worried ever since @Bespokestudy appeared here and on other sites that what they're actually doing is trying to build yet another case for "everybody wear a helmet on a bike because it's just common sense" but it looks from what you're saying that this is a bit more sophisticated than that.

Which is a good thing! Hope to see @Bespokestudy back here to address some of your points*, but otherwise I'm impressed that they haven't immediately gone down the easy (read: negative) route. Collideoscope has potential.

*blimey, they came here and addressed them right as I posted this!!

It would be great if we could work with the forum to include a stickied post in that thread/sidebar for reporting injuries. If anyone could point us in the right direction for this please do.

I've cross-posted your suggestion in the mods thread as I think it's definitely worthy of consideration: http://www.lfgss.com/conversations/172777/?offset=15600#comment11878155

Oh hai Bespokestudy.

Glad to see that you've come back to address the points raised - It makes a big difference to your credibility.

Roadsafe is as good a data source as any, and has the advantage of having some structure already.

In theory, it should not contain reports that involve criminal acts - although the benchmark for what constitute criminal is outrageously high (the police are only interested in acts that can lead to a charge or a conviction - leaving the scene, or collisions, for example, not just DLAC) - the Met insist that any such acts are dealt with through the usual channels.

Obviously any bias can and should be identified, but then that can be accounted for.

The same goes for the rider down - you might not capture 100%, but it's a rich vein of data that can be scraped. You can easily test for confirmation / interpretation bias by adapting the template used to scrape, and parsing searches through Google to take advantage of fuzzier matching.

Next up - Here's an egg. I'm going to teach my grandmother how to suck it.

The well established methodology that you discuss is well established

Are you really sure that the well established methodology is well established?

Thanks guys - sorry we were delayed as said this is all free time work so if we lag on getting back to you shoot us a message on twitter and we will get on it.

@TW what you have described is helpful and appreciated. How we would go about doing this scraping in a non-manual way we would be very interested to find out. If there are any entry level sources you can point us to we will see if we can implement.

@bothwell I have the audio and slides from Tuesday still to work through but I will upload when I get to it so you can hear from the lead investigators mouth that this is not a stick a plaster (helmet) on it study. Also thanks for raising it to the mods.
Again on road safe we will follow this up. I wonder what the data retention/protection policy will be on these submissions. On the form it does state that the contact information will not be passed onto anyone else if they apply this policy to all the data we will struggle to access it.

@Oliver Schick the fundamental injury recording methods in the hospital setting are yes. There are a number of existing standards and measures for quantifying the severity of injury.
The outcome aspects less so, though there are well validated clinical measures of recovery and function. This bit is often (not always), more of interest to clinical staff and those who are looking to improve care. We obviously want to also capture information that can be used to better reflect the true impact of trauma on cyclists.

One reason why we undertook the consultation was so we could identify what other aspects of recovery and the impact of injury on cyclists were of importance to the cyclists.

Was there something in particular you were referring to?

EDIT: consultation is a rubbish word, I mean why we are looking to work with cyclists.

Was there something in particular you were referring to?

He was making a terrible joke based on your tautology. He is compelled to do this by what I can only assume is some ancient familial curse.

Apropos your getting the meeting slides and audio up for public consumption - that's fabulous, thanks for that. Would you consider providing transcripts on the audio side? I realise it means more work for you when you've already got a lot to do, it's just that there are a few deaf cyclists here who would really appreciate it.

Transcripts aren't something that I am going to be able to manage. I will ask the team but personally can't make a commitment to deliver this. 1.5 hours of a meeting with multiple sources will take a long time to transcribe.

If however someone wanted to transcribe these I would upload for everyone to access.

It was a joke, and bothwell is, of course, entirely correct:

He was making a terrible joke based on your tautology. He is compelled to do this by what I can only assume is some ancient familial curse.

:)

Ah, that is a shame. I'm one of those deaf cyclists, otherwise i'd offer to transcribe for you myself! I'm sure your write-ups will be comprehensive, though.