Finally something we can call coproduction mycarebudget.org

 

I have loved the idea of coproduction what it involves and the amazing benefits it can bring from when I first heard of it. It always felt natural to me; we are, after all are we not the sum of all our endeavours? Both my working and personal life has always been based on the ethos of working together for the benefit of all.

Alas, though in theory it is great, a call to evidence three times over various multimedia outlets left me a little disappointed. I was sent brief glimmers of why it had the potential to be real coproduction but unfortunately, it always seemed a step too late or too small.

When a fellow NHS Peer Leader asked for involvement, to be honest, I did say to myself “here we go again”. This time however, I found for the first time a project that not only seemed to ask all the right questions, but also continued to do so throughout the process. No idea or suggestion seemed unimportant. The result… well you can see for yourself. A repository of documents created or used by Personal Budget (including those in health) holders. Free to use, upgradable and has had such a following that its growth has been staggering. 

I got in touch with Peter Glick the creator of mycarebudget.org and wanted to know his secrets. I sent him a few questions and his responses can be found below. I share this with the hope that others will follow his methodology in bringing more pieces of truly coproduced process and deliverables that benefit all. 

Please give brief description of who you are and why you are involved?

Hi! My name is Peter Glick and I’m a PhD student at the Open Lab in the School of Computing at Newcastle University based in the North East of England - https://openlab.ncl.ac.uk/. The Open Lab is quite different from how I imagined it to be when I signed up for me PhD – rather than lots of little rooms with students hunched over their laptops, it’s one big room with most of the students not there! And they’re not there because they are working with schools, volunteering groups, charities, museums, Local Authorities and so on, just the way it should be.

I’ve been working in technology all my career, as a freelancer in software development projects - until a piece of volunteering work I was helping with led to an offer of a fully funded PhD in any subject I chose. My partner manages the care for her son who has long-term complex needs, so I was close to the continual waves of near-abuse she suffers from her healthcare authorities as they hand out (or not), her legal right to healthcare for her son. The topic for my research was therefore an easy one for me to select. That was back in 2018, I now have one to two years left, depending on how many other projects I get side-tracked onto.

My research is all around how technology can support people who have long-term complex needs, usually meaning they need hands-on care 24/7.  That doesn’t mean I’ll build yet another app, there’s enough of those out there, and as the sole person on the project there’s a limit to what I can build. Technology shouldn’t be the end-point to me, it should be a tool like any other tool you might use – it certainly shouldn’t become yet another burden to someone’s life.

Where did you get idea?

Most research has participants, and most research just uses these participants in a workshop and then forgets about them. Me and others at the Open Lab do not work like that. Our participants are collaborators on our research projects, there for the long-term (if they want to be!). For my research, some of the participants have been with me since 2019. They either run a care budget for themselves or for their children, or they work for support organisations that help people to achieve this.

It’s about recognising the expertise of these participants. If I knew everything then I wouldn’t need them. They have experiences and knowledge that far surpass mine. This was evidenced as the participants came up with the idea of www.mycarebudget.org  They saw that when they started out with a care budget that involved paying Personal Assistants and carers, they needed a lot of documents, some of them small (like a staff leave request form), some of them complex (like a staff rota or the care plan). Each one of them had to write their own, with little support from their healthcare authorities, and little out there on the internet. So why not have a website where they could submit what they used, for others to make use of?

The idea of a wiki was suggested. That’s like Wikipedia. Wikipedia can be edited by anyone, just log in and start typing. Other users of Wikipedia will check what you write and everyone debates what is correct.

So the idea for www.mycarebudget.org came from the experts in this field: my research’s participants. I then helped to facilitate them to design it, structure it, populate it. I did the coding and now operate it.

Truly amazing what happens when you hand over control to the people that know far more about a topic than you do!

Tell me about the methodology you used, and why? (coproduction/participatory)

The research is qualitative (so it’s all about analysing what people say, rather than statistical analysis which is called quantitative) and participatory (the research participants play a very large part in the research direction and outputs). It’s very much like coproduction, and like coproduction, it can sometimes be a box-ticking exercise when ‘those in charge’ use it more like consultation rather than handing over control. Like most things in research, the more you dig, the more blurred it gets – there is no single definition of any of these terms, so you pick what you can justify for the research you are doing. The choice of methods was very much driven by working in the Open Lab, which is based in “Digital Civics”, performing research “in the wild”, and around the citizen: that’s all to take research out of the ivory towers of academia and place it with the citizen and their authorities. I am far less activist that most in the Open Lab, but I can see that changing in me!

How have you found the response from people (service users)?

Well, it is rare when things new to you turn out like you planned. That’s the case here. 

I had imagined that maybe a few people would register, that they would add a few documents and edit some of the webpages. That they find it sort of ok as a resource. We now have over 1,300 users, over 75 documents, with lots of people using it every day. When people are asked to offer feedback, they are all hugely complimentary about the resource, which I find humbling.

What is not happening is people editing the website themselves. That is really interesting to a research project!  I have just issued a survey and I’ll then be speaking to users of the website to find out what is going on. I could make all sorts of assumptions why people are using the website the way they do – but I’ll ask the experts (that’s the users) to tell me.

What about organisation?

The website is a public wiki, so just like Wikipedia, there is no charge to download, no restriction to registering and most important of all, anyone can edit and add their own documents to the wiki. That’s the most important aspect to me – it’s effectively owned by the people that need it. There is a moderation process to block the hackers, and you do have to register with an email address, but that’s it.  What’s left to me is to govern the wiki – and that does not take much more than a few hours a week to weed out the spammers and upload documents that people send to me.

As part of designing the wiki, I asked participants how they thought it should be governed and I used the Discussion Forum on the wiki to host the discussion – all open for anyone to read and comment.

How long has it taken you to get from the start idea phase to delivery to thousands of users?

www.mycarebudget.org came into being in mid-September 2021. By the first week in November it has 1,300 users, which just blows my mind that it reached so many people for the size of its target community. Quite a few of the research’ participants (and NHS England) were promoting the wiki so I have them to thank for a lot of that growth.

What do you want to see and what needs to happen next?

First is that the wiki keeps going for as long as people need it. I see it very much in an ‘organic’ sense, in that it will grow and reshape as people want it to. Perhaps – and this is a dream – our healthcare authorities will start offering true support and we no longer need the wiki, I’ll be very happy if that comes true.

What have you learnt?

Difficult to list everything as there is so much, but that’s the reason for a PhD, it’s a learning exercise. I’ll start writing the thesis in 2022 and that’s when most of the learning will come out. An obvious one is that I know far less about care funding than I thought I did – which I think is a standard learning when you start to dig deep into something! Another more practical one is that promoting a website can be a full-time job, as is keeping the spammers away from your website.

What advice would you give to others who have an idea to improve PHB user’s lives?

Talk to the people that have lived experience. They know way more than you ever will. Listen to them and act on what they say.

How has it made you feel?

Humbled. Which might sound odd, but I’ve never had such an impact, no matter how small, on so many people’s lives. I’m still working out what it means to me. Maybe ask me in a year or two!

Anything more to add?  

Just that taking on a PhD might seem like an unobtainable dream for people. It need not be like that. Some PhDs are part time, some do not require a formal education, some are fully funded where the course fees are paid for you and you receive a tax-fee “stipend” of about £15,000 a year. Have a look at https://www.findaphd.com/ . You just never know what you’ll learn

you receive a tax-fee “stipend” of about £15,000 a year. Have a look at https://www.findaphd.com/ . You just never know what you’ll find.

Well there you have it, co production is possible and the benefits are across the board. As Peter says listen to the people. They often know more than you.