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 access and understand what is being communicated. Having trust in those explaining things is a big issue too. “I’m a PR guy I would say that wouldn’t I” etc More on that here.
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. Times when they need to understand what is being talked about so they see it as being for them.
Big data, open data, and use of people’s health and care and personal information are some of these topics. And there are many organisations involved in this which makes it even more complicated.
This isn’t a post about what ‘big’ or ‘open’ data is or the pros and cons of using personal data or who owns what or what will be done with data and whose quantified self is better than another persons. There are many attempts covering that elsewhere on the web. What I’m musing on here is how you might bring about a useful discussion so that people have the chance to understand what is happening, how people can find out what it means and what their options are once they are informed. Similarly how those coordinating discussions get a feel for how a wide range of people feel about the communication and engagement opportunities and the topics being discussed.
The job I have means I will be involved with this. I can see it’s sensitive and emotive and I need to understand it more so I can make the best of how I contribute. That’s why I have this blog, to explore and discuss things.
To be blunt, ‘our’ information has been used since the day we were born; before if you really think about it.
Plans have been and will continue to be made across the country and no doubt wider about how, and what parts of, ‘our’ information will be used. It’s a sensitive issue and rightly people will feel strongly about it and should have a say in those discussions and planning.
A while ago, my mum inadvertently reminded me about this. 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, as we are increasingly ‘life leaking’ all the time. It needs simplifying in words that everyone can understand. Not everyone needs to know what big or open means but they need to understand how what they have and give away works.
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 concoct 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.
Likewise 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 later 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. But my pattern of improvement or otherwise might be an indicator of my health. 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. My usage and patterns of 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. But I can see it 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 a hair dryer on cos we played with it a bit, like you do. We are learning more about ourselves through our recorded actions.
Fortunately, I don’t go to the doctor all that often but I have a health record. They could probably tell me how many antibiotics they have prescribed over the nearly 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.
What I’m getting at is all the above is real life stuff that I’m giving away and someone is collecting and using. There will be stuff I don’t know that I’m giving away. And I’ve just given more away about me in this post.
I didn’t have to have smart meters, Fitbits, Nectar cards, embellished scores etc 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 some of the things I do or have. Some things where I can’t yet see the personal or greater benefit I won’t use. I know that my information is helpful for me and to others. I know that others don’t know this happens or how they life leak in many different ways.
My point is, more people would understand the implications of why taking an interest in what happens to their information, if they could see it in a way that they can relate to. Talk of big and open data, quantified self, data governance, data sharing, smart cities, opt in opt out etc can confuse and put people off or they make choices that they don’t understand.
The examples of my life leak above are all those things, jargon free.
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 how information sharing is better understood and what happens as a result of various engagement opportunities will be down to how it is explained and what opportunities are made for people to have their say.
I do know that won’t be easy and there will be challenge. But I’ll do my bit to help and support all involved.
And as a colleague rightly reminded me last week “it’s sometimes not what we say but how we say it that makes a difference”
There’s something in that for us all.