Thread by @Outcomes_PROMs

A long thread, incorporating my 6,000th tweet! Often asked, so here's my attempt to summarise what I have learned, and believe in the world of #PROMs

With so much use of, desire for and great work in the field why is it so hard and isn't working as it should/ could/ would...?

Firstly stop thinking of tools and focus on logistics, engagement, and embedding an organisation wide culture of collecting #PROMs and #PREMs
This was our starting point 7 years ago at @NorthumbriaOrth - using paper & Excel across 5 hospital sites. #Teamwork

Many parties are already collecting #PROMs - particularly in the world of #orthopaedics - but as highlighted by the @BritOrthopaedic article on @SWORDResearchUK @NetworkProms EMPROVE audit, there is no consensus on what, when or how.

https://twitter.com/BritOrthopaedic/status/1491816281800069132

Some are straight forward e.g. Oxford Hip/Knee/Shoulder/Elbow for arthroplasty, and largely due to @NHSDigital requirements - though they are usually collected via 3rd parties on computer read paper forms, often with low return rates.

A key problem is that the data is not available in real time to the hospital/service/surgeons and if their own data for monitoring patient progress is wanted, the work has to be duplicated in an in-house system, copying baseline data and then extending F/U times.

There are also many other national registries e.g. @NonArthHipReg @britishspinereg @LigamentReg @CartilageRepair @BAJIR_UK & others set up by specialist societies incl. @BOFAS_UK @baskonline @BritishHip @BSSHand This should make it easier to get it right ….?

Yes ... and no!
National registries are a good thing as the specialist societies set which #PROMs they think best, what associated metadata to collect and how often. The combined data is more powerful than small studies and the right people can make use of the findings.

BUT - each registry is separate and the data is siloed. Units/surgeons with their own #PROMs practice have to duplicate their own work if they wish to maintain the integrity of their local records. Then we have Beyond Compliance and clinical trials etc. - all collecting #PROMs

So a patient having #orthopaedic surgery may be asked - separately and at various times - to complete #PROMs questionnaires by: local surgeon/unit, #anaesthetists (esp. if RA), national registry, Beyond Compliance (if implant new), probably physios if applicable, and so on.

A burden for the patients & siloed data giving no joined up view of the patient. Most patients would be willing to give their responses once and - where they consent - shared with the relevant parties who also need the data. They want to help and they know that #datasaveslives

What will - and does - happen is that the patient can become confused, overwhelmed and unsure which Q2 they have completed and for whom. One or more parties then lose out - and ultimately everyone loses out - including patients past, present & future.

The answer is very simple - and yet very complicated.
The Cumberlege report stated: Patient reported measures such as #PROMs and #PREMs should become common currency in the assessment of the benefits and risks of current and new interventions.

https://twitter.com/Outcomes_PROMs/status/1418235969094959107

The government's response was to accept this - and to capture info only once:

https://twitter.com/Outcomes_PROMs/status/1418227781897494529

Great news!
But it will take time. So how will everyone get the data they need and in real time or the timepoints they need?

And what about their differing needs? e.g. patient monitoring/service evaluation is more flexible in terms of follow-up time points, whereas research requires very fixed times with little room to be flexible. How would data be separated, or pooled?

Again, the answer is simple - yet complicated.
Data could be collected locally (making it available for the treating clinicians to use for individual patient monitoring), where the patient's preferences as to paper/online/at home/in clinic can be met and trust established.

The patient would give permissions (ideally they should be the custodian of their own information and choose with whom to share it) and bits of information can be shared as needed with different parties.
*The data should sit separately prior to use by various applications*

This is the principle behind the development of @open_Outcomes - an #Openstandards, #Opensource @openEHR electronic platform for #PROMs collection, recording & analysis. But this isn't about one platform. It's about expertise of the many, openly shared for benefit of all.

There are many good #PROMs solutions out there - but most have vendor lock in or siloed data. Even if able to extract and share, there's no standardisation. So before we can share, we need to collect the same things, the same times, the same format, regardless of platform.

Having completed the EMPROVE audit, the National #PROMsNetwork @NetworkProms is next hoping to engage with the #orthopaedic specialist societies to attempt to work towards this. A big aim, but we have to start somewhere. We have #PROMs people, researchers, clinicians ready to go.

Imagine a world where we could have real time data at our fingertips - in clinic, in theatre, in GP practices, in research, in health economics... and that this data could automatically feed in to the various national registries or studies. An open world of #PROMs #PREMs & more!

This is the dream but we need a lot of people to share the dream and work together to try to achieve it. This is so important at national, regional and local level, vital to clinicians and important for patients - and not limited to orthopaedics of course!

This is where I feel we are now - across the UK and beyond, and across specialities. We need to join it all up. But can we?
If not we remain individually figuring it all out, taking years to cover the basics - so shouldn't we at least try?