The NHS Citizen project recently ran a test of what it calls Gather, the middle part of the three-part system that’s being built to provide a way for citizens to bring issues directly to the attention of the NHS England Board. I was able to participate in some of the Gather test to get a sense of how the whole thing will eventually work, although it still doesn’t completely make sense to me.
The three parts of the whole NHS Citizen system are broadly Discover, where issues from the real world of the NHS will be captured, Gather, where issues will be discussed, and the Assembly, where selected issues will reach the NHS England Board.
The recent limited test of Gather took issues that were raised by citizens (though not through Discover), it allowed some discussion, and it will present selected issues to an Assembly. So although it’s a bit sketchy it’s really a very exciting live demonstration of key parts of the system using real issues that face the NHS.
The Gather part of the system itself has three stages, at least in this test. The first stage, called, er, Gather, allows for issues to be discussed. In the second stage, five issues are selected to go to the Assembly. In the third stage, called Refine, those five selected issues are summarized and discussed further.
I’m not sure I fully understand the whole thing, so if some of what I write about it here is confusing, that may simply reflect my genuine confusion. For example, I find it confusing that the first stage of Gather is itself called Gather.
The Gather first-stage website
The Gather website for the first stage of Gather was built on a WordPress platform (using bbPress), essentially the same underlying software as the blog you are reading now, so Gather doesn’t immediately look like the discussion forum that it is. There are ways to make bbPress look more like conventional forum software, so that it hits you right in the face that this is a place where people contribute, rather than a place where people just find information, but this design seemed to go a little in the other direction.
The organization of the site is non-obvious in other ways. What’s usually called a topic is here called an issue, and what’s usually called a forum is here called a topic. What’s usually called a post is here called a discussion, sometimes, or a reply or post in other contexts.
And in order to contribute, it’s not enough to register on the site and log in, which is perfectly usual. You have to “join” a topic too for no apparent reason, which is unusual. Having joined a topic you still can’t post your opinions about the topic, only your opinions about the issues within the topic.
A few little bugs and glitches in this test site also got in the way from time to time. For example, a bug made joining a topic when you had already gone down to the level of an issue even more perplexing.
But essentially the website worked well.
Topics and issues
Many issues had been proposed for the test, and as some of them were duplicates, or near duplicates, they were grouped into 112 actual issues on the site. Then these were further grouped into eight topics. The topics were less meaningful than they appeared, though.
For example, the topic Community health contains an issue about “postcode lotteries”, but I think this issue really belongs in the topic National management. And the topic Treatment and services contains an issue about obesity, but I think this issue really belongs in the topic Community health.
I can see the value in having some grouping of issues, because even as few as 112 of them would make a simple list a bit daunting, and when Gather is running permanently it will contain many more. But the trouble is that allocating an issue to a topic seems to be making a statement about the solution to the issue — the solution to obesity lies in national management, the solution to postcode lotteries lies in the community — even before there’s been any discussion.
And the topics aren’t necessarily much help in finding an issue that concerns you as an individual. For example, while writing this I wanted to find the obesity issue, but I couldn’t remember what topic it’s in. I only knew that it’s not in the obvious one. So I had to use the search box to find it.
To see what was going on, I found the Recent Discussions (that is, posts) listed in the sidebar very useful and I soon found myself looking there first every time I visited the site. I probably missed some of the action because there were only five in the list. It would have been good to have more, and also indications of their age.
Conventionally, Internet forums list the most recently active discussions first, mark particularly active discussions as “hot”, and show you which discussions have had new contributions since you last visited, and I missed those kinds of feature. I’m not a typical user, perhaps.
The two weeks or so of the test were not much time for discussion. At the time of writing, near the end of the test, 68 people had registered for the site (including members of the NHS Citizen team). The topic Treatment & services had the most members, 19.
These numbers are a bit lower than they should be, because the original contributors of issues are effectively anonymous, and some later contributions to the discussions are also effectively anonymous.
The issues discussed by the most people were discussed by five people in each case, at the time of writing, although this number does not necessarily include multiple anonymous people who may have proposed the issue in the first place or joined the discussion via the administrators. The issue most often proposed was hyperparathyroidism (a hormone disorder), proposed by 22 people, but only one person commented on it during the test.
Only a third of the issues, 36 out of 112 by my count, got any discussion at all during the test.
Determining the outcome
The outcome of the Gather test is a list of five issues that will go forward to a meeting of the Assembly on September 18th.
Choosing the five issues will have been hard. In one way, hyperparathyroidism is an obvious choice because of the number of people who contributed. But in another way, it’s an obvious one to exclude because there must surely have been collusion between the 22 people who proposed it, and then they didn’t even bother to register on the site and discuss it, which all seems strangely half-hearted.
Another issue that has strangely half-hearted support is cancer of the pancreas. A charity, Pancreatic Cancer UK, lobbies effectively for better treatment and more research into this condition. The charity has its very own All-Party Parliamentary Group (APPG) that is conducting an inquiry into the relevant research, and via an e-petition it has arranged for a debate at Westminster in September. Yet just one person from this well organized, well funded and very active campaign, John Lancaster, supported the issue in the Gather test. Searching the Internet reveals that a John Lancaster whose wife, Joyce, died of pancreatic cancer, has been involved as a member of the public with some of Pancreatic Cancer UK’s campaigning.
There was superficially similar, though subtly different, support for Youth involvement in policy development. A charity, Mentor Foundation UK, part of an international group, works to protect children from alcohol and drugs. Part of its strategy is to “influence the policy environment” and one of the ways it wants to do that is by getting young people involved in NHS policy through NHS England. Again, just one person from this well organized and very active international campaign, Abigail Rowlands, supported the idea in the Gather test. Searching the Internet reveals that an Abigail Rowlands works for Mentor Foundation UK. More curiously, young people are already working with the NHS England Board through the NHS Youth Forum. Do the people at the Mentor Foundation not know this? It’s all very odd.
The issue Young people’s sexual health services got support from Tamzin Hull and Thomas Yems. Neither of them mentioned the NHS Youth Forum, but that issue is already one of the Forum’s priorities, and both a Tamzin Hull and a Thomas Yems took part in the youth conference in February from which those priorities emerged.
Of course, John, Abigail, Tamzin and Thomas are just as much NHS citizens as I am, and nothing improper has happened here. It’s just that the whole Gather process, in this test at least, seems vulnerable to mere duplication of discussions taking place elsewhere. It might be that when the Discover part of the system is working it will be clear when an issue is under discussion in more than one place, and then the question of where is the best place to resolve the issue will be easier to address openly. The best place might not always be NHS Citizen. It might be an APPG, the NHS Youth Forum or somewhere else.
At the same time, when a discussion is taking place elsewhere it does not automatically mean it’s inappropriate for NHS Citizen. The discussion elsewhere might be limited in some way. For example, the discussion in NHS Citizen might include voices that otherwise wouldn’t be heard. This could even be the case in any of the examples I’ve outlined here. Perhaps Pancreatic Cancer UK, Mentor Foundation UK and the NHS Youth Forum aren’t as inclusive as they could be, and NHS Citizen could help to open up the respective issues to citizens in general.
Towards the end of the Gather test, I noticed something that wasn’t an issue there. In terms of the test there was never any possibility that it could be, so I’m not complaining. Yet I think it’s a good example of how NHS Citizen could be of value to the NHS and to citizens.
“…help commissioners and service providers to organise person centred care and recovery oriented support for mental and physical health, and to know when they are achieving it.”
Geraldine Strathdee, NHS England’s Clinical Director for Mental Health, is quoted at length in the press release, saying amongst other things that:
“…there is no more powerful advocacy for mental health care in England, than the voice of users telling us about their experiences…”
Over at the independent Mental Health Forum, though, the voices of mental health care users have been scathing, saying things like:
“Talk about giving people false hope.”
“At the end of the day mental health services will do what the big bosses want irrespective of whether it meets service users’ needs or not.”
What’s happened here is that No assumptions has been produced by service providers effectively as a marketing tool, and NHS England together with the CCGs are the target of the marketing. NHS England and the CCGs need a way to find out what’s really going on, without having to rely on existing service providers for the information.
NHS Citizen could be a way for Geraldine Strathdee to come to understand that she’s not being told the whole story. It could be a way for NHS England to make it harder for any single lobbying organization or consortium to dominate the discussion of any issue in the way that can so easily happen now.
The recent Gather test was not designed to test that possibility, though. For that to happen, Discover would have to find and connect people with very different points of view of the same issue, people who are not currently talking to each other. And Gather would have to be much more active and inclusive, because at present just a handful of stooges could completely unbalance a discussion there (even though I didn’t see that happening in the test).
So, although NHS Citizen has various things planned for the near future, I’m now looking forward to seeing how the Discover part of the system will work, and how Gather can be made much more vibrant than it was in this limited test.
For this test the process of selecting five issues to go forward to the Assembly was slightly mysterious, and the whole exercise was only a test, and I was out of the country for a while around the time it was happening, so I didn’t try to follow events closely at this stage. The five issues selected were:
- Young people’s healthcare
- Self-care and personalised services
- Access to services
- Gender Identity services
- Mental Health services
You can see that four of them are issues of vast breadth, while one of them stands out as being extremely narrow. In Gather, gender identity had been mentioned in two issues that received no discussion at all, as far as I can tell. It’s an interestingly counterintuitive selection.
The five selected issues then appeared in a new website called Refine. I found the Refine website utterly perplexing. What had been selected issues turned into categories in the new website, and in each category a number of ideas appeared. I think the ideas were all originally issues in the Gather website, but I’m not sure. I didn’t find links from Refine back to Gather.
For example, in the Gender Identity services category the two ideas are the two issues from Gather that had received no discussion there. In Gather they had been under different topics, but in Refine they are under one category and they appear on the front page of the website. Perhaps as a result of this, they did get some responses in Refine.
Any discussion that had taken place in Gather seems to have been lost, so that the discussion in Refine had to start from scratch. The intention may have been that everyone looked up each idea in Gather to see what had been said there, and summarized what they thought of the Gather discussion, but the design of the Refine website discouraged this.
For each idea in Refine you can vote the idea up or down, you can make points for and against, and you can post bulletins (sometimes called discussion threads) and reply to bulletins. You can also post advertisements through a points system.
So, in terms of conventional Internet forums, each Refine category is a forum, each Refine idea is a topic, and each Refine bulletin is a post, with posts nested to one level (meaning that you can reply to a topic or to a specific post, but you can’t reply to a specific reply). But in addition each Refine idea can have special posts that are flagged as points for or against, or advertisements, and that no one can reply to. And in addition, each Refine idea can have votes up or down, unconnected with points for or against or advertisements. The structure is horribly overcomplicated.
Worse, the design of the site makes the complicated structure opaque. For example, on the home page you can see the category Young people’s healthcare at the top. It contains eight ideas, but you can only see three of them. The idea Involving young people in NHS policy development has three points for, but if you click Join debate you can only see two of them. You have to click through again to see all the discussion of the idea that’s on the site, and there doesn’t appear to be an easy way to see any discussion of the same idea that may have taken place when it was an issue in Gather.
Technically, the Refine website looks as if it was originally designed for some other purpose, and then hacked into shape for NHS Citizen. I can’t tell what its original purpose may have been. It contains code relating to an online payments system, and a couple of user tracking systems (blocked by my privacy settings…heh). A glaring error in the tag structure means that if web browsers weren’t so fault tolerant then all Refine’s pages would appear completely blank.
I think the test Refine website is a terrible mess. Gather should be a single, simple website that encourages participation by ordinary people. Overcomplicatedness favours geeks, professional lobbyists, and stooges who have been instructed by them.
It’s true that the present test Gather website would need some extra work to incorporate issue selection and other bits of process needed to support the Assembly, but doing this extra work would be technically simpler, and clearer for end users, than trying to untangle the present mess.
The next thing to happen will be the Assembly test on September 18th, which anyone can watch online. I’m planning to take part online, in the discussion of mental health services.
The four ideas that appear in Refine in this category are:
- Parity of esteem for mental health
- Neglect and Crisis in maternal mental health services
- Happiness – mental health
- Young people’s mental health services
Of these, parity of esteem is by far the most popular, with nine points made for it, 20 up-votes and no down-votes. However, NHS England already has a parity of esteem programme with a focus on talking therapies, dementia and mental capacity, and it will be interesting to see whether the Assembly discussion can challenge this effectively.
In another sense, however, parity of esteem is a soft target because NHS England was criticised months ago for its decision to cut mental health funding relative to other health funding. Therefore we are likely to see some response from NHS England on parity of esteem regardless of input from NHS Citizen.
The other three mental health ideas in Refine are weakly presented there, it seems to me, and I would find it hard to make a strong case to the NHS England Board on what, if anything, should be changed.
So the NHS Citizen project continues to combine fascination and promise with intriguing pitfalls.