How much have you thought about what data you share online? Do you know who has access to it and what they can do with it? What if health and social care organisations could do a better job by sharing the information they have about you with each other?
Just imagine if you could update your own health record; opt for the council to text you reminders to put out your bins; download an app which pushes relevant information to you about health, wellbeing and leisure in your city – a sublime vision of the future or one which leaves you cold and indifferent?
As part of the Leeds Digital Festival, local NHS organisations and the council, supported by NHS Employers, NHS Confederation and NHS England, will be deliberating with the citizens of Leeds (and beyond) about all of these questions and many more from 21-27 October. We are partnering with Leeds Data Thing to test out a social conversation which will help shape the use of data in our city.
To kick start the conversation we will be uploading blog posts every day which will shed light on the topic from a different angle – kindly written for us by people who use local services, council officers, clinicians, councillors and chief executives. Everyone has a view, an opinion, a fresh perspective – something we hope will engage you, interest you, and spark a conversation.
Here are snippets from just a few of the many posts we’ll be sharing:
@PositivitySmile uses Twitter as a source of support for their mental health problems and is startlingly frank about their worries on what will happen to their personal data in the event of their death;
On a lighter note @PhilJewitt imagines a day when the council can use your data to push useful services to you Amazon-style;
Heather Nelson mulls over the suspicions that she comes across at the Black Health Initiative @BHILeeds about institutions using data as a ‘big brother/spy tool;
In contrast @YeomansDavid explains how he has used big data to illuminate local health inequalities and asks whether services are smart enough at using data to improve practice;
As well as local perspectives, we have contributions from a range of national organisations, including Dr James Munro from @PatientOpinion who shares his thoughts about the importance of anonymised data as a valuable feedback tool:
Looking at the tens of thousands of stories we have published since 2005, all of which you can read for yourself at Patient Opinion, what is striking is how much so many authors have been prepared to share. You will find here stories of despair, grief and loss, stories of great joy and gratitude alongside stories of hard won recovery, or decline. People have shared intimate details of their mental health difficulties, their gynaecological disorders, their addictions and their cancers, for all to read and, we hope, for our public services to learn from.
Lastly, we learn about a vision for the future of data in Leeds from @lisamulherin, a councillor and chair of the Health and Wellbeing Board, who describes plans for the city where data will play an important role in improving care and support:
Citizens should wherever possible be active participants in managing their own health and social care. Having easy access to their own health data can greatly assist that self-management.
We’ll be running an online survey and a daily opinion poll as well as a wiki where you can directly contribute the principles of data privacy that you think should be core to the city of Leeds. You can find it all on the Leeds Data Thing website.
Please join in the conversation on Twitter using the hashtag #AboutMeLeeds. I hope you will share it with others and encourage them to join in too. If you’d like further details, please get in touch firstname.lastname@example.org