Tuesday, 10 November 2015

BartsMS Database in the spotlight - for all the right reasons



When I moved from Queen Square (UCL/UCLH) to the Blizard Institute of QMUL and The Royal London Hospital of Barts and The London NHS Trust in 2009 I soon realised we only had a vague idea of the number of pwMS in our care. Whilst everybody in the team did their best on an individual level we didn't know our *population* of pwMS very well. This caused challenges on all levels: consistency and safety of clinical care, auditing of our practice, inclusion of pwMS for research and clinical trials. 
 

As a result, we started building The London MS Database, initially supported by n=1 medical student (Oliver Richards), but soon with fantastic buy in from our specialist nurses, consultants, junior doctors, and others, including Charles Gutteridge, the Chief Clinical Information Officer at our Trust.

When Christo Albor, medical student with a PhD in Epidemiology from York University joined our team 4 years ago, he took the Database to a new level. He is also responsible for entering us in the competition, so thanks and well done Christo!

Fast forward 5 years the Trust is now called Barts Health, and the Database...



Here is an extract of Christo's entry for the QuDos award:
"The BartsMS Database Team is a multidisciplinary group led by Consultant Neurologist Klaus Schmierer and Epidemiologist and Medical Student Christo Albor. The database was started in 2012 with a goal to collect and update data of all people with MS known to Barts Health NHS Trust. All efforts have been made to keep the data accessible to clinicians and associated researchers to enable audits, research, and recruitment to clinical trials. So far, there are over 1,200 people with MS registered with the database with continuing collection of data on relapses, treatments, patient outcomes, disability measures, risk factors, etc.

One audit has been completed using the BartsMS Database on the use of Natalizumab. The audit identified that record-keeping of relapses in electronic notes and clinical correspondence was often insufficient for determining retrospectively whether patients were eligible for treatment at time of initiation. In presenting the audit findings, clinicians were encouraged to be more meticulous with recording relapses in order to track patients’ progress. However, positive findings included a comparable reduction of relapse rates after initiating Natalizumab treatment when compared to clinical trial data, and a good rationale for stopping treatment when it was necessary. This audit is currently being expanded to include data from other NHS Trusts in London...

https://www.researchgate.net/publication/277007553_Ethnicity_and_Multiple_Sclerosis_Prevalence_in_East_London



A second audit is currently being conducted regarding the equitable provision of MS services in the local area. Research was initially conducted to provide the context for this audit, in the form of an epidemiological analysis of the prevalence of MS by ethnicity in the local area. Through collaboration with the Centre for Primary Care and Public Health at Queen Mary, we identified that the prevalence of MS amongst Black and South Asian locals was orders of magnitude higher than prevalence rates at the countries of origin for such ethnic groups. Given the ethnic mix of our MS population, we aim to identify whether there are any differences in service provision between White, Black, South Asian, and “Mixed/Other” people with MS...

Research using the BartsMS Database is very active. One project aims to evaluate the reliability of a web-based self-completed version of the physician-based expanded disability status scale (EDSS). Once validated, the web-based EDSS we hope will become a valuable patient-based outcome that can be updated at regular intervals in the BartsMS Database to allow for a higher resolution patient monitoring...


The BartsMS Database has also been used by clinicians for ‘filtering’ patients into lists of those who are potentially eligible for on-going clinical trials. In this way, our patients have been invited to take part in clinical trials even if they have not had serendipitous clinical appointments that fall within windows of recruitment. As such, we are trying to minimise lost opportunities for patients who want to take part in clinical trials.

http://www.ukmsregister.org/Portal/Home

Finally, we have integrated the BartsMS Database with the National MS Register by giving patients the option to consent for linking their clinical data at Barts Health with the MS Register. So far over 100 of our patients have consented for this type of data linkage, therefore allowing them to update both the national and local databases via the MS Register’s web portal. We are in the process of adapting our electronic record-keeping to ensure that the BartsMS Database is up-to-date, accessible to clinicians, and for those who consent, synchronised securely with the MS Register."

Well done to the whole BartsMS Database team:

Christo, Aggie, Ollie, Tim, Josh, Maria, Freya, Grace, Gavin, Ben, Monica, Sharmilee, Kimberley...

CoI: The BartsMS Database has been generously supported by non-restricted grants from Novartis and Biogen.

4 comments:

  1. should this be in the spotlight for nominating ourselves?

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    Replies
    1. Re: "...should this be in the spotlight for nominating ourselves?"

      Absolutely; these are medical students who need the spotlight. If there weren't self-nominations there wouldn't be an awards ceremony.

      Delete
    2. Agree entirely (of course). Nomination is only the flag waving. Prizes are awarded following review of the evidence.

      Delete
  2. Well done for bringing recording of data and making good use of it into the 21st century! And of course for being Highly Commended in the awards scheme. And for all your hard work and creativity :-)

    ReplyDelete

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