#AboutMeLeeds – join the conversation 21-27 Oct 2013
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
Reblogged from Digital Mental Health by @VictoriaBetton
Here’s my contribution about my thoughts on Data Privacy.
Reblogged from Leeds Data Thing
Recently, I’ve started to think about the trail of information about myself which I make publicly available every time I log onto a website, partake in a bit of social networking or make an online purchase.
It concerns me that I may be inadvertently leaving enough of a footprint for the data to make me easily identifiable in a way which might leave me vulnerable. It also irritates me that personal information that I freely supply is then used by marketing companies to sell their products to me, based on the data profile that they’ve gathered about me
However, worrying about my data privacy is one thing, but worrying about my children’s privacy online is quite another. My children are not old enough to make decisions about what information they would want to be publicly available. What’s more, the permanence of such data can span a lifetime, so how will they feel when they are older knowing that the embarrassing pictures and moments of their childhood that I share about them on Facebook may come back and haunt them years later.
Improving health outcomes
Before my children were even born, I happily signed them both up to participate in a large scale medical research study which involves their health being tracked from pregnancy and then through their childhoods in order that the causes of common childhood illnesses in our local community can be investigated and that the information obtained from the study can be used to improve health outcomes for people in the area and further afield.
I’m not concerned that the project is using this information in a way which might compromise my children’s privacy, as I’m satisfied that the data is being used anonymously and in a way which does not make them easily identifiable.
However, this prompts me to think about the use of our personal data in health care more generally. Lots of conversations are starting to be had about how technological advances in health care, particularly in relation to electronic patient records, are increasing the opportunities and potential for patient data to be used on a wide scale to make decisions about future treatments and health care provision.
Who will be responsible?
For me personally, I’m wondering whether the boundaries about data privacy will start to shift as technology continues to advance at such an accelerated rate. I’m curious about who in the future will define what health information is acceptable to share more widely without the explicit consent of the person who the information is about and who will have ownership of this information? What’s more, what checks will be in place to ensure that the information we keep about people is accurate. These questions are important now, but even more so in a future where this information may become publicly and permanently available and where it may possibly have implications for a person in any number of areas of their life.
I would love to hear other people’s thoughts, views and experiences about all this?