This week we are looking at use of personal information as part of the Joined up Leeds ‘big conversation’.
Not that I entered the communications profession for an easy ride but some topics are more sensitive to talk about than others, as is finding the most appropriate way, places and times for people to find out about and understand what is being talked about.
Sometimes it doesn’t matter if not everyone knows about something. There are times when people do find out about things but they might not be interested. There are however times when people need to know the implications of something as they might need to make a choice that affects them or others.
Use of people’s healthcare and personal information is one of these topics. There are many organisations involved in this which makes it an even more complicated process.
Plans have been and will continue to be made locally and across the country about how and what bits of ‘our’ information will be used and for what purposes. It’s a sensitive issue and rightly, people will feel strongly about it and should have a say in those discussions and planning. That’s why the Joined up Leeds conversation is happening to help shape an information sharing strategy for Leeds.
The job I have means I’m working on this. I can see it’s sensitive and emotive and, like others, I need to understand it more so I can make the best of how I contribute. I also live in Leeds so it affects me too so I thought I’d share my thoughts and maybe get people to think about their situation too and take part in the Joined up Leeds survey.
Our information has been used since the day we were born; before if you really think about it in pregnancy scans and hospital notes. That is ‘our’ information.
My mum reminded me recently about the use of information. She’d just been shopping and thought it was a coincidence that the money off coupons that she was given with her receipt always seemed to be for things she bought. Funny that! When I asked her why she had a Nectar card, the response was “so I can collect points”. When I told her the real reason, the response was “can they do that?”
Seriously though, there are some big issues about what people really understand about what this data stuff means and what they need to know and how they are encouraged to find out and take responsibility for their information use. It needs simplifying in words that everyone can understand. Not everyone needs to know what big or open data is but they need to understand how what they have and how what they give away is used. The Joined up Leeds conversation is an opportunity to find out more at one of the events and tell people what you think about how your health and personal information might be used.
So I thought I’d explore my own ‘quantified self’, not that I know how it all works.
I started with the example similar to my mums. My store cards. I know there will be a pattern of my family’s supermarket buying habits. Someone somewhere has enough information to have a good guess as to what I have for breakfast and what I might mix and match for my tea. They could probably tell the condition of my teeth and can probably predict the next time I will fill up with petrol. I’m OK with that.
Likewise with my hobbies. All the specifics are recorded. My golf scores are all entered on a system when I complete a competition. I have the option to ‘embellish’ them so I can learn about the good and bad parts of my game, on the off chance I don’t know hitting my ball into a pond isn’t a good thing. I occasionally do Park Run at my local park. My times are recorded. I and many others can see them and it gives me a reason to try and improve. I’m fine with that. But my pattern of improvement or otherwise might be an indicator of my health. Collectively the overall increase of more people doing park run and average times might be indicators too.
My son has a Fitbit. It tells him all sorts. My car registration is probably recorded in many places at various times of the week. As are my bank transactions and locations that I do things from. I will no doubt figure in the anonymous Leeds city centre pedestrian footfall camera information that is now stored on Leeds Data Mill.
I’ve just had smart fuel meters fitted at home. I don’t need to read my meters again or arrange to be home so the meter man can get in. That’s helpful for me and the gas board. My patterns of gas and electric usage are sent direct to the utility companies. They can use it with other people’s to see the overall demand and plan for the various peaks. If that helps to stop power cuts or reduce CO2 then great. But I can see the information too. I get to see a green light go amber when I switch the kettle on. It goes red when we also switch the microwave and hair dryer on at the same time as we played with it a bit, like you do. But we are learning more about ourselves through our recorded actions and we can choose to change our behaviours should we wish to as we are better informed.
Fortunately, I don’t go to the doctor all that often but I have a health record and the hospitals will have details of my various visits. They could probably tell me how many antibiotics they have prescribed over the 50 odd years I’ve been on their records. Put that together with other folks and they could probably see a bigger pattern of prescribing and even results of different antibiotic use.
I didn’t have to have smart meters or use Nectar cards but I chose to based on the information I was given and what I understood about it. I trusted what I was told and thought about my options and made a choice to have them. I know I can opt out or cancel if I wish. Where I can’t yet see the personal or greater benefit of doing something I won’t use things or sign up. But I know that my information is helpful for me and to others. I know that others, like my mum, don’t know how their information is used or how they ‘life leak’ in many different ways. That’s why it’s important to talk about these things so people can understand what it’s all about and what choices they have.
I’m no expert on data use, I’m not a teccy, I don’t set health or data policy or strategy and I’m not one of the many folk in many different roles in the many organisations in Leeds or elsewhere that collect or use people’s health or care information. But I do know that the success of information sharing will be down to how it is explained and what opportunities are made for people to have their say and understand it.
So I’d encourage people to have a look at the Joined up Leeds conversation, and perhaps share your thoughts or go along to one of the events or fill out the short survey so that health and care organisations such as the council and NHS in Leeds can better understand your views on how you would like your information to be shared.
Leeds City Council