I’m at a meeting for NHS Citizen today, looking at the technology and technology platforms that will underpin the democratic space we’re trying to develop for NHS England.
I’m here because the more I hear, the more I understand that the choices made about the technological platforms that underpin democratic spaces will have serious implications for how the spaces work, who talks to who and the way they behave in that space. The choices could constrain these spaces, or set them free. And it has huge implications for the strength of our democracy.
I’m trying to live blog my thoughts as they occur to me (a new thing for me and the Involve blog). There is a great group of people here, with lots of tech platforms and thoughts about how to make them better. I’m not going to tell you about these, but rather try to reflect on the wider implications for NHS Citizen, democratic reform and citizen engagement. I’ll keep updating this and put new thoughts at the top.
Sorry, end of this post, must dash 30 minutes before meeting ends.
Catherine notes a question from a meeting with people from the Voluntary Sector yesterday. ‘If I said something in NHS Citizen 5 years ago then will it be remembered?’. These’s a tech question to this, how much data is it possible to store and usefully use? But there’s also a question about what the system is for, is it for facilitating real world relationships, or about long term data relationships?
Anyone can have a Mydex datastore, doesn’t need any data assurance. The question then arises as to how an organisation can tell that they are talking to a real person who is who they say they are. The Mydex model works by demonstrating that you have long term and persistent relationships with organisations [not totally sure I follow this], but it sounds like as these grow (and as government changes parameters) that this will become easier, especially if DVLA issues you with a driving license and this comes back into your own Mydex datastore.
Following on from last point, move to personal control of own data, is where Mydex comes in. And this is much more than just a basic set of identity data, it is actually pulling data from your bank, health and so on into your own data store, that you control and give (or refuse) access to others (rathern than them deciding whether to keep data on you or not).
Getting all this right requires the right governance structures and assurances (both to citizen and organisation I assume), but it will bring real benefits to both.
Big Data is basically uncuratable because the personal is missing from it. Privately held data is so valuable to the individual that you can trust what you hear from it and this brings significant benefits to government and corporations.
From William at Mydex: Four years after his big report Beveridge wrote another report where he said he may have made a fatal mistake in missing out the role of the individual in the NHS.
Rowan Williams 20 years ago said that we need to move away from thinking about patients as consumers, because they have to do so much themselves. We need to move towards thinking of them as agents.
Finally, missed who William said it was who said this, we need to move from a CRM (contact relationship management) system to a VRM (Vendor Relationship Management) system, which changes the notion of who owns the data.
Catherine: There’s a difference between trying to listen to everyone (or networks/ people) and how to try to connect people. Connections both in terms of conversations as well as more persistent connections between people. This latter is about information, discussion and data flowing round the system.
An important document to read as part of the underlying context for data and tech in the NHS is The Power of Information (link leads to archive, will try to get full link if I can [it’s here https://www.gov.uk/government/publications/giving-people-control-of-the-health-and-care-information-they-need).
Hearing from Electoral Reform Society – Member Engagement Services makes me understand that, while our networked view of the world is clearly right (!), we do need to make sure we have a basic comms architecture. Raises questions for how NHS Citizen, as a non-organisation, can engage with people already engaging democratically with others in ways that magnify what they want to do, and us. But there are clearly dangers of working with the databases of others that we appear to be using personal data in ways that citizens didn’t want it to be. I think this is a known issue and largely a question of tone and ways of communicating.
Catherine’s perspective on the debate point that is raised below, is that we need to add more data and information into the debate. The hope is that this will help to make the quality of the debate higher. Anthony makes the point that we need to create a system (on and offline) that moves from informed (and pro social, sorry, second time I’ve used that today, must be channelling Matthew Taylor at RSA) debate to solution (or perhaps I guess, question for someone in the system, but a question that helps move to solution)
It’s an obvious point, but Robert from the Citizen Foundation, highlights that the structure of the online platform can support or act against deliberation. They have split the screen in two and people must put pro and anti arguments up, it helps support more polite conversation and consensus.
My worry is that this can lead to the ‘balanced coverage’ problem that the BBC is accused of, it could risk bringing up to the top arguments that are only supported by very few people.
In terms of my worries about slicing up APIs (see below), Catherine’s point back to me is that we need to create a common (and open) data taxonomy (ie a tagging system of the underlying data) that is easily understood.
I get the theory, struggle to understand what this really means in practice. Particularly as this conversation was in the context of developing internationally agreed data taxonomies. International agreements don’t have a good history of being engaging and open!!
Become more aware in conversation: data visualisations can give the aura of having the data and creating understanding, but if you don’t have access to the underlying data then you don’t have control (if you’re techie and know this stuff sorry, see this live blog as being from a canary in the mine, showing what interested in this stuff don’t understand).
Now hearing from THP Innovate. Making point that data is important, but not whole. Need to find ways to ‘put a face’ to it. This gets to the heart of NHS Citizen and wider participation for me. There is a danger that data starts driving everything and pushes the human out of it. Creating ways for people to talk (on and offline) is going to critical.
Catherine sees the value of this as being about a transactional relationship (I assume she means something like a doctor’s appointment) into a wider social relationship when needed. Sounds to me like she’s thinking about how we make the system as seamless as possible for the citizen (who will be even less techie than me (on the whole)).
Sounds to me that if you aren’t techie you need to think about APIs as just being the plumbing and you need to understand two things about it: what are the pipes connecting to what? And what are the pipes delivering, hot water, cold water, sewage (and multiple other forms of content as my metaphor begins to breakdown).
Just heard from Wazoku (all links below). An open policy making platform. Catherine noting that one of our challenges is going to be to get the staff in NHS England to engage in deliberative conversations. Platforms like Wazoku might be one way of creating a safe space with low barriers into the wider NHS Citizen.
This is interesting. Philosophically I’m against creating these spaces. I’m worried that we’ll never get them out of the safe space, but pragmatically I can see that we need to find a way to help them to change their behaviour. It’s all going to be about creating the right incentives to support people inside and outside the system to start engaging, and this may mean safe spaces (as Patient Opinion presentation showed (below) this isn’t just for staff, but also for patients and carers trying to share distressing problems with wider implications)
Robert from Citizens Foundation (who is working with us on Gather), in response to Patient Opinion presentation, is asking about APIs (Application Programming Interface). Conversation around how stories from Patient Opinion can be pulled into Gather (for example) as a way of feeding deliberative citizen conversations. This raises questions about how the API works, and it sounds like (to my non-techie mind) that the API needs to be adaptable to what the system needs (rather than just a fire hose of everything I assume).
Strikes me that finding ways to help citizens understand how the data and stories are being sliced and diced is going to be important for helping them to understand what is and is not part of the deliberative conversation we are trying to promote/provoke.
The Healthberry presentation highlights for me is that different datasets – Patient Opinion, NHS Choices, for example – have different underlying data structures and that this means that it’s difficult to bring different APIs together. Healthberry is ‘normalising’ the APIs, which I think means bringing them all together into one API that means a user doesn’t need to worry about doing it.
Even more reason to make sure that underlying data structures and choices about what to show and not are out in the open. And how easy will this be for the majority of citizens who don’t think about databases, data structures etc?
Patient Opinion presentation raising points that we need to consider in NHS Citizen. Patient Opinion is a platform designed to get around the issue that problems staff and patients raising questions are ignored. This seems critical issue for NHS Citizen for me. We must create something that is more than a talking shop.
Asking people for their experiences doesn’t mean it’s all negative, 50% are positive, and this goes against what most people at top thinks. NHS Citizen is going to have to support this kind of pro-social behaviour.
A key challenge for Patient Opinion is how to ensure stories can be shared safely (people often needing to share private medical facts) and to ensure that staff aren’t defamed. Challenge about tension between privacy and getting in-depth engagement.
Here’s a record of tech and people we heard from so you know a bit about what we heard (and perhaps what we might be missing):
Now we’re talking about risks. One of them being around the tech piece, and that as (if) NHS Citizen grows. If we are going to create a tech platform that is able to iterate, the challenge is that as it needs more money to turn from prototype to fully functioning system it will get captured by larger players, or the latest fad in tech.
We then got into questions of ownership of the code – part of this got into open source questions that I don’t fully understand. But as I understood it, we need to find a way to work collaboratively, but with the code owned by NHS Citizen. This then raised a question about the governance of NHS Citizen. Below I noted that it isn’t an organisation, but if code needs to be owned then there needs to be an ownership structure.
Thinking on the hoof and not having run this past the team or Olivia (dangerous), this suggests to me we need to think about how we create a system of trust for the system, a Community Interest Company or some such vehicle? But how do we get around the model that this suggests, which is of (more) white middle aged men sitting as trustees because that is where the power lies?
Catherine – you can do a lot more with the system if you know who people are.
Follow-up conversation, fragments, not fully formed as my understanding is fuzzy (see below). Citizenship identities don’t sit well with the British sensibility. Partly, knowing who people are in the system means you can make sure that forty comments aren’t all coming from the same people.
We’re now talking about why known identities must underpin the NHS Citizen system. Catherine notes that she doesn’t mean that people must be identified publicly, they can use screen names etc. But they must be known to the system. This is part of the citizenship behaviour that NHS Citizen must create.
I feel like there’s something more fundamental I’m missing here about the tech – one of the many things that feels fuzzy to this non-techie.
Really fascinating how much people here are talking about the need for behaviours to change if we are to change the way that those with power listen to public and patients. Point made that most (big?) participation organisations are led by white men over 50 (and I fit two of those three).
I’m going to try to understand how tech can help change, constraint or magnify existing behaviours.
Catherine just presented the system and the tech that needs to underpin it. ‘It isn’t an organisation’. Question raised – but what about the governance? For me this is a significant tension. Olivia (NHS England Head of Public and Patient Voice, responsible for NHS Citizen (I’ll try to identify people if I possibly can), highlights the fact that creating an organisation means that it will compete with others doing good participation in the system.
My feeling is that we need to create a participation and tech system that is able to evaluate and learn from itself, and adapt if it’s not working. This has big implications for the tech. It must be possible to iterate and adapt the tech; we can’t be bought/ built into one path. And the tech itself must support open learning, as much as the softer participation infrastructure.
Another way of thinking about this is that we’re trying to create an ecosystem not an organisation.
And Catherine (Howe of Public-i and one of NHS Citizen partners) points out that this is why it is important that the tech is built into the open (as well as being open source).
Catherine highlights that NHS Citizen will be thinking of Big Data as a way of supporting relationships and not one of surveillance.
Anthony Zac points out that this is not about tech at all, but about the soft human relationships that underpin an effective NHS, and the tech needs to support this. My take home is that we need to make sure that non-techies don’t allow techies to lead just because they don’t understand.