Back in February we launched Discover, a new register of people living in North West London interested in getting involved with health research opportunities relevant to them. By joining the register, patients and the public are able to get involved with research studies that could contribute to a healthier future for everyone. Discover, which is also linked to the WSIC database, also offers a range of services to researchers including retrospective and real world studies, as well as the opportunity to assess whether their studies are feasible to carry out in North West London
Programme Director Amanda Lucas discusses the fascinating developments from the Discover programme over the last six months….
Since we launched back in February Discover has been making fantastic progress – both in terms of attracting researchers who want to work in partnership with us on research, and also receiving support from partners keen to help support us on recruitment of patients to the register. We are also working closely with the NIHR Clinical Research Network to develop research partnerships, and support the development of research applications through the established governance that has been set up to support Discover.
So, what have we been working on since the launch of the register back in February?
World class research studies
Excitingly we have been attracting world-class research studies to our sector. Seven research studies have now been approved to use the Discover health research platform for research purposes, with many more in the pipeline.
- A study assessing wheelchairs users aged 65 and above, exploring complexities of co-morbidities and examining their conditions secondary to disability
- A study seeking whether opportunities to intervene in alcoholism in patients suffering from liver disease have been missed
- An evaluation of an app that supports breast cancer patients
- Two research studies relating to mental health analyses
- A study assessing how to optimise care to reduce the risk of severe asthma attacks
- A study looking at predictors of hospitalisation for end of life cancer patient
We are delighted to be supporting such exciting research locally in North West London, and look forward to hearing the outcomes of the projects!
Recruiting patients to the register
We have been working closely with our partners to promote Discover to patients, encouraging them to sign up to the register and hear about health research opportunities that are relevant to them. So far, West London Mental Health NHS Trust, Hillingdon Hospital Trust, Chelsea and Westminster Hospital NHS Foundation Trust and Central and North West London NHS Foundation Trust, as well as a range of GP practices, are helping drive patient recruitment through a number of their own internal channels.
We also recently held a round table event with a number of medical charities including diabetes charity JDFR, the MQ mental health charity and National Bowel Cancer, to discuss how we can work more closely to both recruit to the register and also how their members can get more involved with designing research studies in specific disease areas. We are also very keen to continue to develop our dialogue with patients in North West London about how their information is being used to support research across the sector, and we’re recruiting a specialist in this area to develop an engagement and campaign strategy for Discover.
Plans for the future
As the register grows, and we continue to build our recruitment and research partnerships, we will also be continuing to expand our team to meet the growing demand for our services. The pipeline of research is also looking promising and we have a number of exciting potential research partnerships that will look to test out hypothesis on specific disease cohorts that have not been possible to investigate elsewhere. We are also collaborating with Imperial College on an academic paper that will deep dive into the methodology and background to the WSIC data set that we are aiming to publish later this year. We are working closely with North West London Information Governance Leads to ensure that Discover is embedded into the NWL Information Sharing Agreement (ISA) that is being updated, and we will also continue to showcase Discover across North West London, promoting the register at various public and researcher-facing events.
The next few months will bring even more crucial developments to our programme, and I’m looking forward to all the opportunities they will bring – both for the programme and for North West London!
Please don’t hesitate to contact me on firstname.lastname@example.org if you would like to find out more about Discover.