BLOG: #OpenDataSavesLives session on 22 April 2021

The second #OpenDataSavesLives session of 2021 to be led by the Health Foundation looked at open data and digital innovation in home care and supported living and was chaired by Ellen Coughlan, Programme Manager and Fiona Grimm, Principal Data Analyst.

Joining us were Claire Sutton, Digital Transformation Lead, National Care Forum; Emma Back, Growth & Strategy Lead, Equal Care Co-op and Simon Whitehouse, Data Standards Adoption Consultant, Open Data Services and Chloe Pont, Data Scientist, Birdie.

You can watch the session here.

Useful websites:

Hubble https://www.nationalcareforum.org.uk/the-hubble-project-digital-innovation-hubs/
Future Care Capital Community of Practice https://futurecarecapital.org.uk/latest/new-fcc-community-of-practice-aims-to-improve-social-care-data-and-use-it-to-transform-lives/
Faculty of Clinical Informatics https://facultyofclinicalinformatics.org.uk/
Digital Social Care  https://www.digitalsocialcare.co.uk/

Key points from the live chat:

Paul Connell opened the session by setting out the following four pledges:

Pledge 1

#givethedataback

All data that gets requested by government should be shared with the people that sent it so that they can use it for planning and research.

Pledge 2

#savelivesnotdata

Provide a robust argument against the loose language put up as ‘privacy concerns’. Build on the strength of the Covid COPI notices.

Pledge 3

#radicallyopen

Break down traditional models of data ownership, use the web to communicate, share and innovate together.

Pledge 4

#sharemydata

Encourage people to put their data in a safe place to learn from others health statistics and inform research.

We also try and encourage people to do three things - 1. Story blogs 2. Technical Blogs and 3. Repo's for data & code.

Claire Sutton, Digital Transformation Lead, National Care Forum
Claire.Sutton@nationalcareforum.org.uk
07796 251 666
@clairelsutton

Marc Farr said that “Social care data is notoriously difficult to bring together with NHS data, interested if our speakers think this will improve? Specific issues are around the permission to bring clear data together or use fuzzy logic on name and addresses where NHS numbers are not available from social care. I think there's a good opportunity to consent home and care home patients for research and begin to model outcomes - the 'deteriorating resident' based on live clinical data about them. This has big implications for reducing ambulance conveyancing and acute admission avoidance.”

Claire replied “Social Care Data is incredibly difficult to link with health data, it's largely free text format for one, it focuses on things that the health sector doesn't need to be bombarded with. It's totally relevant for social care to know that someone enjoyed doing a jigsaw this morning, but completely irrelevant for their GP or cardiologist. A clear interoperable format for data need to be adopted, not to detract from what is recorded, but to enable sharing for the snippets that are needed to be shared. NHS number isn't even universally recorded by many care providers, some systems don't even have a field for it. Good data sharing can and does reduce hospital admissions, COVID pulse oximetry at home, use of clinical observations that can be shared has proven this.”

Tom King asked whether the OSR report on statistics on social care from a year ago has had any impact?

https://osr.statisticsauthority.gov.uk/publication/report-on-adult-social-care-statistics-in-england/

https://osr.statisticsauthority.gov.uk/publication/adult-social-care-statistics-in-scotland/

Paul Connell commented that this sort of thing stops people being data literate, along with the likes of https://future.nhs.uk/

Claire agreed with Paul. “Definitely, we need to break the misconceptions around digital v data literacy. Digital literacy is growing across the population, my 91 year old grandad has a smart home. Would he know how to utilise the data created to change his day? almost certainly not, but he doesn't need to. If the 1.6m roles within social care can become digitally literate then we can grow the percentage of them who are data confident.”

She added “The NHS futures platform is not helpful for social care. We've tried so hard to encourage membership of the fantastic Digital Nurse Network but as it's hosted on NHSfuture it's instantly a barrier as people think 'that's not for me' if they ever do manage to negotiate the world’s worst UI then there's a good chance they'll give up and lose hope !”

When Paul said that NHSE are spending £1.5M on building an update of NHS Futures, Claire commented that she was in two minds about it, meaning that it can’t be any worse, but also that's a whole lot of money for what will almost certainly be more of the same. She said that the National Care Forum has raised that it isn't inclusive for social care, but the general response is that they're very happy to let social care colleagues join. The discussion around how the branding is exclusive doesn't land well sadly. UI/UX aside, if you call something NHS then straight away social care are always going to think 'that doesn't apply to me, it isn't for me, I can't/won't engage with it' and that will take a lot to break.

When the National Care Forum surveyed their membership, 56 respondents completed the survey and 45% of organisations answered ‘yes’ to the question “Do you employ someone with a specific data analysis role?'”- far from something we can say represents the sector, but hugely positive in terms of the fact 45% of those who replied are already aware of the value of data.

You can see Claire’s presentation here.

Emma Back, Growth & Strategy Lead, Equal Care Co-op and Simon Whitehouse, Data Standards Adoption Consultant, Open Data Services - Open tendering and open performance

You can see Emma and Simon’s presentation here.

Chloe Pont, Data Scientist, Birdie - Using social care data to identify personalised medication interactions

Marc asked Chloe whether Birdie’s data could be linked to a regional linked research dataset in Kent (known as the KeRNEL) and whether the results of any statistical analysis are published? (I’ll have to watch the video of the session again as I didn’t capture the response).

Giles Dring asked Chloe whether the idea is that this model is made openly available to enable agency systems to alert carers to possible side effects?

Paul asked Claire “Why don't we turn the #OpendataSavesLives website into the collaboration space for Social Care - story blogs, technical blogs and repos for data & code, open to everyone  all searchable and accessible on a phone...”. Claire agreed saying “I think it would be the perfect place to have that collaboration. We share a lot on digitalsocialcare.co.uk but a less formal collaboration environment would be great especially to bridge the gap between those at the early stages of their journey and those who are data competent.”

You can see Chloe’s presentation here.

#OpenDataSavesLives Survey time

12 May 2021

#OpenDataSavesLives community survey. Your feedback is important to us in shaping our #OpenDataSavesLives event programme.

BLOG: #OpenDataSavesLives session on 6 May 2021

06 May 2021

Chaired by Dr Marc Farr, Founder, Beautiful Information Ltd and focusing on digital care homes, our 27th Open Data Saves Lives session on Thursday 6 May 2021 saw a record attendance with 49 participants.