Edge Talk: Exploring online health communities, with Paul Hodgkin and Ben Metz

[Mel.Captioner is Live]
SPEAKER:
It is 9.30 a.m., I want to make a start. If you have any suggestions or contributions, please make it via
the chat room, we are going to be talking about exploiting online health community and I'm going to
introduce both of these individuals to you.
Ben, he has over 20 years experience across enterprises in the business society, and has a strong
grounding in analysis and design. He has a keen interest in helping people improve organisational
dynamic to effect change, encourage new behaviours and innovation.
Really interesting work he is doing in Jamaica around innovation. I would love to hear more about that
from you, Ben.
BEN METZ:
That was a while ago.
SPEAKER:
Paul is the founder of Patient Voices. He wants to make a system of patients available on the NHS.
We would love to hear a lot more about that. I'm going to hand over now to Paul and Ben, to take us
through their presentation on exploring online health community. Over to you both.
PAUL HODGKIN:
I'm going to kick off, we're going to split the presentation between us. When I left Patient Opinion, I left
last year, and I really wanted to understand better the emerging world of online health communities.
Which feeds into the emerging world of digital digital health will generally. Currently, there are lots of
platforms out there, lots of patient organisation to run forums, patients who set up forums. There are
forums for doctors, forums that do research.
The kind of questions that were in my mind talking through with Ben, while these joining up? Why don't
we have a Facebook for health? Despite the good work done at companies like mine, and Health
Unlock, there has been no big disrupter in this field.
How can we make this happen in a way that helps patients and busy staff. A year ago we got some
money from a health foundation, and (unknown term).
BEN METZ:
We sat down with people, the majority UK-based, some further a field. We talk to them, they are all
engaged with running online health communities. We talked to them for a couple of hours each, at
least, about what was working, what was not working, and how to overcome the challenges.
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I think, Paul, sorry. Sorry, we're just tried to figure out who is running the PowerPoint.
PAUL HODGKIN:
I think we have your PowerPoint up. Are you there?
KATE POUND:
If you go to the very top it has online help. If you go to the top, there is a slide with online help. You
should be able to move it back.
BEN METZ:
We sat down with 70-odd people across the world online help communities asking them what works,
what doesn't. The approach is to listen deeply and put all of our preconceptions to one side.
For those of you into academic research, slightly left-field academic research, we used an adaptive
process of grounded theory methodology. What we end up with is a huge amount of qualitative data
from the 70 and vigils, which we try to make sense of, and simplifies into the key challenges that these
individuals and organisations are facing, and the key design principles that they're using to overcome
this challenge.
We call the challenges barriers, and the solutions design principles.
PAUL HODGKIN:
We're going to talk to some of the barriers, at the end of that time we will have a pause, and look at
what is coming into the chat room.
BEN METZ:
Sorry, I am just getting up to speed on the PowerPoint. There is a link that should be live, and the
research can be read there. Throughout each of the slides, there is a link at the bottom to the relevant
page on the website so you can read more deeply about the research.
First up is barriers.
PAUL HODGKIN:
We wanted to talk about technology, which is beastly key to what has been happening in the last 15
years in this area. Technology is a huge enabler. Lots of clear and important things that could be said
about it.
Three somewhat less obvious factors which impact on online health communities, the first is if you
think about the technology the NHS invests in.
£1 billion a year invested in IT. How much were citizens investing at that time? How much do we invest
in our own IT? If you think we invest about £400 per household, which is not very much for our
broadband, mobile, PC, iPads. You get to £10 billion a year. As citizens, we are investing at 10 times

the rate of all other organisations, be they commercial or the NHS.
That is a significant driver about what is happening in this field. Because of that, hierarchical power is
collapsing. It is becoming harder to exert hierarchical power. In terms of social media, news, it is also
happening in health.
One rate is happening in health through contacts collapse, in the past, 20, 30 years little extra to
practising medicine, it was clear who you were. You were in a doctor role, and nobody really could see
anything about the rest of your personality.
Now it is really obvious from social media what your doctor is doing, what his or her interests are, you
can find a Facebook pages and so on. This presents a whole area of what is termed within the
literature context collapse.
The context in which we design and guide our social interactions is suddenly much more confusing.
You don't have the real-life face-to-face signals, you can see multiple different aspects of the people
you're interacting with and personalities.
We know in everyday life, in our out of work personas, then we are on Facebook, Twitter, but it is
really confusing in a health context. In the third bit of this, citizens are getting technical power much
faster than organisations and that is disabling hierarchical power.
As a patient it is hard to navigate this world. The last bit of this, which is important, medicine has
traditionally been structured as a parent-child dynamic.
That is really important and necessary when you are ill feeling vulnerable. But the technology of the
web is very much peer-to-peer. Very much autonomous units interacting with each other, and it
proposes all the time, in all the systems that touches, it proposes adult relationships. You can see on
Twitter, for example, people interact, not necessarily in an adult way. But as adult to adult, rather than
parent to child.
That changes fundamental to why (inaudible) find it difficult to interact with online communities. They
need to have the assurance, certainly I did. I knew what was going on. I was the parent figure. The
online world continuously opposes the adult relationship.
That is the first set of barriers to do with technology, disrupting the physical way we communicate,
which we are all familiar with. Much deeper psychodynamic processes about how medicine and health
care have traditionally been carried out, and are much harder to do in this online world.
BEN METZ:
Next up, the actual title of this barrier we suggested was finance and business model constraints. The
very nature finance and business models driving online activity are a fundamental constraint on the
way in which online health communities can develop. Paul talked about the exponential growth of
digital technology between users and the NHS.

What you effectively have risen exponentially increase in terms of uptake in the use of technology, and
an exponential decrease in cost meaning the technology is increasingly available to the likes of
individuals over and above organisations. At the same time, the business models that drive online
activity, rather the investors and the money that goes into online activity, is seeking an exponential
increase in town.
The reality is as power shifts from organisations, be it investors or healthcare, private sector or public,
to individuals, return, that exponential return, is going to the individual and leaving the organisation be
it investor or public sector, behind.
What you have is a fundamental dichotomy, where the money needed to get going in online health
communities is seeking a return that it simply cannot get in those worlds. The other thing that is very
interesting to think about within the context of finance and business models is the concept of figuring
out the balance between intrinsic and extrinsic motivation. Intrinsic is something I do for the love of it,
extrinsic is something I do for reward.
What having one of these in my pocket means if I can do pretty much anything whenever I want,
according to what intrinsically motivates me. As a consequence, activities which deliver extrinsic
rewards are falling behind activities that deliver some kind of intrinsic reward. As a consequence, there
is another reason why for the investment needed into online health communities to realise the return is
expected.
Finance and business models fundamentally constrain online health communities, is what we found.
PAUL HODGKIN:
If you are running one of these platforms, you are continually trying to manage this unstable trilema
around trust, the values you are trying to promote, and money.
That money, if it is from a venture capitalist, we talked to a lot of them. Then it will create a very clear
return which immediately impacts on trust. People are thinking, "Who is getting the money here? What
is going to happen if I give my time and experience as a patient for free?"
When I was managing that trilemma, it was a continual difficult, and unstable thingy were trying to
satisfy. It is doable, but it is not easy, and it is certainly not the model you find in Shoreditch, and the
kind of investment model venture capitalists are looking for.
BEN METZ:
Exactly, who is up next?
PAUL HODGKIN:
This is a truism almost, the medical model and NHS rule the world. In social media, it is run on
anecdotes, gossip, anxiety, truth sharing, a very different set of ways of knowing the world.

When we talked about people, patients running their own online groups, how difficult it was for them to
manage online forums were somebody would be violently in favour of, say, (inaudible) therapy for their
condition, and others were saying it is really important to be evidence-based.
[Robert.Uk.Captioner is Live]
But how do you handle gossip about a particular provider? Is that representative or not and how do we
make judgements about our local hospital if we read something on social media about it. There are
different ways of viewing the truth here that are not easy to reconcile. That is a significant barrier to
what is going on. So, scale, scale when we came to this, the original title of our research was massive
open online, disease orientated humanities. It was a mouthful. It was modelled on MOOCs.
Clearly, there are disease orientated communities and they are relatively open and online. What we
have found over and over again is that they are massive. I that they are massive. What we wanted
was a Facebook for health. Something that will go to scale. As Ben was saying, the investors were
saying…
BEN METZ:
It is usually trip advisor or Uber for health.
PAUL HODGKIN:
Certainly would then health, there are very strong forces which promote the fragmentation of those
communities and the splitting of those communities. Those forces are things like, I just want an online
community that covers renal failure and rheumatoid arthritis or this is getting too big, I'm not going to
participate any more. I'm all again, so I will withdraw. There are all sorts of personal reasons were the
energy rises and falls in health communities.
A community focused on motor neuron disease has different requirements in terms of governance. In
terms of the disease trajectory compared to say down syndrome. These prevent big scaling, the
logarithmic scaling that investors are looking for and people like me when I started patient opinion
were looking for.
So, scale, it is a bug, not a feature for online help communities. Scale is something that patient
organisations and investors and NHS in England, in terms of care connect, are looking for. But,
actually, it is a bug and not a feature. People need the ability to split their communities, to let them die,
for them to fork. If these things occur, really have intimacy and genuine sharing that they are capable
of.
We thought about this is something we called clustered scaling. In each of the bubbles, is a given
community. It might be a disease community or I community centred around a specific hospital. Or it
might be a research community or whatever. The dynamics in each of those bubbles are very different,
they are particular to that community. You can have two communities, there are lots of communities
that talk about big diseases like diabetes. They will have very big dynamics, within the same disease
community, of what is causing them to scale or not.

As a platform manager, looking at these communities, it is important to recognise that this is
happening, but it is unlikely in our view that you will get a massive unicorn single type Facebook or trip
advisor for health. That is a good thing.
BEN METZ:
I will pick up on something Mark said quoting. It lays a kitten in the eye as it falls. John Poppam. I'm
not sure in that context but the context we are talking about, a unicorn is a billion-dollar valuation, tech
company. Everyone in the tech world is looking for that unicorn. I would paraphrase that quote from
John and say something like everytime an engaged patient logs into an online help community, the
unicorn breaks his leg and spears a clinician in the eye. Something like that.
A comedic paraphrase. Another point on the slide, Robyn Dunbar. If anybody is in the mood, if they
don't know his number go onto Wikipedia and looked Dunbar's number. A psychologist who worked in
1991 for meaningful group size. He identified that the maximum meaningful group size where we can
hold cognitive meaningful relationships is 150.
He issued a paper at the beginning of this year looking at this number and testing it within the context
of online communities and found that number stayed the same but more importantly from our point of
view, there are smaller groups, he called an average of 15 people create sympathy network and an
average of five people create your intimacy network. What we found again and again were small
people working intimately together to support each other, a group of type I diabetes patients on a
Facebook group for example.
Some these groups provide a support but not a big level. And community groups up to 150. Some
level of meaningful engagement was going on.
PAUL HODGKIN:
With 150 active participants, they may have more active participants. The number of active
participants, as humans we are limited in being able to cope with 150 people.
BEN METZ:
That's enough on scale, now governance. In governance terms, it is tough for the NHS. For our slot, it
is a doddle. Procurement is a nightmare, we go out and shop, Amazon or the Apple Store. And
regulation is painful for the NHS but for us we take the terms and conditions. What we have is this
bizarre contradictory world of online health communities that are so lightly governed, they can go on
and make sense of the world, try to interact with a system, the NHS system which is a heavily
governed.
It reminds me of the Cathedral of the market… Of the bizarre, that's it. That's it in terms of governance.
PAUL HODGKIN:
There is a symmetry between the NHS, citizens are investing at 10 times the rate in their tech that the
NHS is, you can see why we should be placing our bets on the citizen, on the patient side of the

equation and not on the NHS organisation commercial side of the organisation. Not because the NHS
is particularly stupid, it isn't, it is because big hierarchical organisations have to deliver tightly coupled
systems where it really matters they get it right.
They are going to get much further behind the wave of citizen innovation that is happening.
BEN METZ:
I will just answer a point, is there a ratio to watching participants in these communities. Very simply,
Tim, you would generally look at 10 to one. We have found some evidence we are looking at more like
93 to 95 to 5 or 7. Essentially, if we have a community, you could see a total community of 1500. That
is what we are suggesting from the research. Moving forward, identity. Blimey.
We have done some of this, I'm jumping back and forth. Somebody is on hold. Could somebody,
everybody check they are on mute?
JO HEMMING:
We can still hear you fine.
BEN METZ:
I didn't realise he would have a context lapse. There's an online identity crisis. It was put forward in
2007 by an American researcher who was looking at the phenomena of people recording onto
YouTube and realising that you are not just recording to the whole world there and then but
broadcasting to the whole of the future. As a consequence the context in which you make sense of
how you communicate to the world fundamentally collapses. As Paul touched on earlier, we have
multiple different media by which all social media in which we are watching our contest collapse,
Facebook, LinkedIn, twitter being the obvious ones.
When I can figure out where my clinician is on holiday and they can do the same for me and I don't
know if I need to find them are not and I don't know if it is appropriate to use Skype for the
consultation, how do I make sense of my identity, how do I engage in this brave new world of online
communities.
OK, so I think we pause briefly to see if people...
JANET:
Hi, there. Can anyone hear me?
SPEAKER:
We can hear you, Janet.
JO HEMMING:
You are on mute at the moment.
JANET:

Can you hear me? Fantastic. Just going to going to Kate to find out what is happening in Twitter. Are
you there Kate?
KATE POUND:
Morning, everybody, we have some great stuff happening in twitter. We have a couple of questions, is
it OK to feed them to you? Or shall I wait? We had a question from Caroline, will will be going into the
downsides of online community? I thought it was focusing on lack of investment, possibly, I wondered
if you are going into that later in the session. Ben and Paul?
Another question which has been from a different Caroline who wants to know about health and
support, online communities, what can we do to develop online communities. We have had lots of
interest, people love the analogy of the unicorn, lots of people wish they could have the unicorn in the
chat room. There has been a lot of discussion about barriers and online communities. Thank you very
much, I don't know if Paul and Ben would like to think about those questions at all.
I think Paul is possibly on mute. Or Ben.
JANET:
Hello, Paul and Ben, are you there?
Paul, you are back off mute.
PAUL WOODLEY:
Paul and Ben, if you click on the microphone on mute yourself.
JANET:
If you have any further questions, please mention in the chat room, or go to Twitter and put them on
Twitter.
KATE POUND:
Paul and Ben have an issue with audio. What is really interested me this morning were the discussions
about how we can support the development of online communities. What areas could be developed.
What are your experiences? Have you been involved in online communities? Tell us about it in the
chat box, do you have any top tips you can give each other today in development of online
communities? I think that would be really helpful.
That is part of the great thing of Edge Talks.
JANET:
I'm also thinking about the cost, how can we get support, is it all gifted, or are there grants are there to
help you? Or is there a connection with what is already out there.

Make a contribution in the chat room, and we concede that back to them.
KATE POUND:
Are you back with us?
BEN METZ:
Yes. Maybe you could summarise a couple of comments, and we could respond.
JANET:
One of the comments was and how do you develop online communities. This step-by-step guide, if
you like, how to do that. Another question I had was around what are the costs of doing this. Other
grants available? Other people available who can offer expertise to people who want to set up their
own online community?
PAUL HODGKIN:
Sure. What we're saying is the standard route doesn't work. The grant giving route often is the way
organisations get started. If you are going to manage trust, values and money, you have to have a
business model that supports this. Ultimately just getting grants doesn't do it.
If you don't get it right, and this is repeatedly claim from the evidence, when somebody started making
money from an online forum, trust immediately broke down and communities tended to disintegrate. It
is really important to think about money. We have some ideas about meta-capital, which we will come
onto. You are looking for capital and investment, not to build the trip advisor for health, but to resolve
some of the surrounding problems on how you build trust, educate commissioners to be online in ways
that are productive.
That sort of metalevel of solution finding, which is something we work closely with the work you do, is
really important.
BEN METZ:
A couple of things on that. What we see again and again, actually, in other projects I have been doing
not health-related, but similar with regards to how online works, people say what we need is a trip
advisor for…
Essentially, maybe dragons. If you think about Paul's point, that relates to software as well as
hardware. Anything I need to build now would be a fraction of the cost in one year or two years' time. If
we put a lot of money into building a platform, it will be updated as soon as it is launched, or shortly
after.
Trying to think about things in terms of Trip Advisor or Uber, they be dragons. We found a number of
companies just using Twitter and Facebook. Zero cost, immediate results. The centre that user
centred design piece is thinking about the intrinsic motivation of the individual.
PAUL HODGKIN:

Which takes us on to the next section. Whether things we need to talk about from the chat room before
we do that?
KATE POUND:
I think people are just tuning in, listening and really enjoying the conversation. Not many questions at
the moment, but I will keep you posted.
PAUL HODGKIN:
Let's crack on with design principles.
BEN METZ:
From the 70 people we interviewed, these were the clusters, the solutions people were using again
and again, so they become principles from which we design online health communities.
PAUL HODGKIN:
This comes on to your question, Helen, a step-by-step guide to all of this. These communities begin
with, almost always an inspired individual. Often a patient, quite often a clinician.
Supporting them and identifying them, and helping them find the right business model that manages
that trilemma with value and money. At the same time, when big hierarchical organisations come in,
they disable these communities. It is really hard for NHS England to do this stuff.
It is really hard for a trust to do this stuff. Immediately the community say, "Hang on, why are you doing
it? Why do we need you, why can't we go on as we were as a community of individuals?" The answer
is because that is not sustainable, you need a business model. The business models that come in
from NHS in England or venture capitalists (inaudible). Finding inspired individuals, helping them and
supporting them through this is part of what needs to happen.
BEN METZ:
An inspired individual on their own is fine, but an individual needs some kind of infrastructure around
them. They can only get so far on their own.
PAUL HODGKIN:
If we just move on to the next one. We have done that one. Motivation. How do you make internal
motivation in whilst running a business which generates enough money to survive? Wikipedia does
this. It has 3000 or so volunteers who do 90% of the duration of Wikipedia.
They have the Wikipedia foundation which raises five-$10,000 a year. If (unknown term) was running
an organisation making $50 million a year, no one would give their time. It is not surprising it is difficult,
this is a really new type of organisation, one that runs on internal motivation on a gift economy, where
people are getting stuff for free.
But also has to make its way in the financial world, enough to pay the people who are dedicated at it,
to pay their salaries and mortgages and the rest. And I think in terms of all that, from the user's end,

we need to be able to give a sense of (inaudible) fulfilled together with complete transparency about
how the money is handled. If someone is diagnosed with a diagnosis they received six months before,
if someone feels they did something worthwhile, that the gift has been appreciated, and that somebody
is, somewhere, making enough money to run the business, that it is done in a transparent way and
almost certainly not for profit.
BEN METZ:
I hope you guys are starting to get a sense of what we have uncovered, this highly interwoven set of
complex issues where there is no right or wrong answer.
We need to balance the need to find a resource to build and sustain the community with the right
mechanisms which intrinsic motivation is nurtured and supported and sustained.
With the specificity of geography, social and cultural difference. To the point, how do you start step-by-
step to develop this? My feeling would be that we are steeped in this now. Try to understand these
dilemmas, trilemmas, quadrilemmas, whatever they are. To understand whatever decision one takes,
it is going to be problematic.
I'm going to briefly go back one slide. One of our key findings was being an honest broker. Being
aware of these paradoxes, we spotted a critical piece. Paul did a really amazing job being an honest
broker with Patient Opinion, and it has stood the test of time with many public, private start-ups.
Because of that honest brokerage and awareness of the tension.
PAUL HODGKIN:
There are some simple things you can think about. One of them is routinely closing the loop. On
Patient Opinion, when you clicked on this story, you can see the activity associated with the story. You
can see who has read the story, who Patient Opinion had sent the email to.
If you look at some stories there will be 30 or 40 individuals across the NHS, social care, and in
Scotland for instance, quite a few members of the Scottish Parliament have read stories. Simply by
adding that stuffing, you increase the gift back to the author.
Closing the loop would be a really important part of all of this. Involving clinicians in ways that surprise
them. Yes, clinicians do get involved in patient forums, but it is quite transgressive for both sides.
Try and think about ways you can involve clinicians in other ways. (unknown term) which does
platforms around long-term conditions have a current program called 100 SP. It is 100,000 people for
Parkinson's, it involves downloading if an app. It allows you to log your movements, log how you are
doing each day.
That creates a database for clinicians for 100,000 people. Suddenly find clinicians becoming interested
in that because it is a new research resource. You pull clinicians in that way. I'm sure the NHS
community have lots of examples of that, where you are engaging clinicians in new and exciting ways.

BEN METZ:
Our last design principle was the idea you build architecture for emergence. Again, the step-by-step
way you develop an online community, one way certainly not to do it is to build something in such a
way that the architecture is rigid and does not flex to the needs, desires and motivations of the
individual users.
Specific around that is this idea of forking, which links into clustered scaling. When groups get to a
certain size, and the difference of interest in that group is such, is that such a level they end up
splitting into different elements, or different subgroups.
Ensuring that the architecture allows and enables that level of emergence rather than attempting in the
way of the venture capitalists streaming of unicorns, without getting skewered in the eye, maybe it is
venture capitalists who gets skewed in the eye. It is building out into the architecture, the emergence.
PAUL HODGKIN:
It is really hard for the NHS to do this, I think. It comes back to the need to build honest brokers and
support honest brokers in way that the NHS might feel uncomfortable about because they don't control
it. Stuff might happen that they don't control. But if they don't join the dance in a flexible way the
communities will evaporate around them.
BEN METZ:
That is it for design principles. We can stop now if there are stuff we want to chat about. Or we can
don't opportunity.
KATE POUND:
One of the things is about identity and condition in the chat room. Is it the case that people would go to
an area, a place where people have a similar identity or condition? Does it really matter? Do you
think?
PAUL HODGKIN:
What people need… They need the granularity, they need the twitter for people who have not heard
about a support group for their condition, the big, open stuff, the median stuff Ben was talking about
where people can find out what are the key things and the fine-grained granulation that is often not at
all visible. It is just them and peers.
There needs to be an architecture that allows that any organisation feels easy with it. And there is an
organisation run for people with severe illness, they had users wanting to set up a subgroup because
one of their members was dying and they wanted to have a group where they could talk about this.
This was an enclosed Facebook group, it was closed anyway but in the community and they wanted to
set up a smaller one.
The organisation was wondering how they could run this and see what was happening. They went with
it and that is what they should have done. That was what the community needed. Having system

managers for these communities and these platforms who are comfortable with allowing that to
happen and allowing communities to split and get to the level and size they need to provide the
intimacy is important.
BEN METZ:
There is a lot of assumption that when you build an online community you need to be all things to all
people and the reality is, I have an identity, I have a condition, I go to multiple different places for my
identity to be serviced and engaged and for my condition. The best person to decide the assemblage
of parts or my identity and conditioners me.
JANET:
You know you talked about trust and values, it is a difficult combination those three. It is a very
important combination. How do we get to achieve that combination, the alignment between trust,
values and money? When we want to set up something online?
PAUL HODGKIN:
It is a great question, we don't know the solution and we should not beat ourselves up. These are
problems in the last 15 years that have become possible. My experience of running Patient Opinion
per 10 years, originally we thought the NHS would pay for this. It turned out they didn't, they thought
we would beat them up with comments. They asked why they should pay for that.
We can try classic fremium, free and premium model which is found on the web. There are extra
functions you can pay for. Most people who use Patient Opinion go on to pay for all the extra services
and that is what keeps Patient Opinion going. It is horses for courses as to the business model. Can
you hear me?
JANET:
That is absolutely fine.
PAUL HODGKIN:
One of the slide that has the triangle and you look at the resources, you will see a list of all the
possible business models we identified from our interviewees that they were using that could be used
to support this kind of thing. They will have different benefits, depending on what you do. It is always a
question of keeping money and trust, it is difficult in this new age, that is a clash between external
motivation, money and internal motivation, trust.
It is important, it is a 20th-century generic task to understand in different contexts how we manage the
last between money and trust.
JANET:
How can we engage NHS managers in the use of online communities?
BEN METZ:

We are having a go with one NHS in London, one team. We will let you know if we manage that.
PAUL HODGKIN:
If we go onto the next one, the next slide coming up.
BEN METZ:
That is a good question to transition to our next slide.
PAUL HODGKIN:
This brings a lot of what we are bringing together. It helps people running platforms and NHS
managers. On the vertical side you have got where it is mostly transactional, the DVA side for road
tax. The bottom, horizontal side you have got feelings about a site that are mostly relational. That will
be a forum for you realise you are not the only person with a disease and you can do something about
it and you feel very emotional, at least for a while. He realised you are not alone.
The upper left-hand quadrant in blue is emotionally cool and scales, importantly. The DVLA one has
no emotion in it but isn't highly scalable. Typically, they wanted many. There is one side, many people
have things done. They are organisationally focused. On the left, the red light lettering, it is warm, the
Dunbar number.
It is really hard to think of organisations that lie between the blue quadrant and red quadrant. What you
have to do, I think what you need and what managers need to understand is that you have a scalable
transactional site like for instance the trust website in blue and then an online community where it is
red and you need stories that take people from one to the other routinely.
What takes users from the transactional site to the scalable one. There might be an introduction to the
emotional one, you might want to see stories of people going under renal transportation. What might
take them that the other way. So you managed a small emotional, warm stuff that does not scale with
the big scaling staff that organisations need to make this value for money. It is about the stories that go
back and forth on that user journey.
BEN METZ:
I remember Paul working the slide up for a group and saying what is in the middle, and I said there
was nothing in the middle. It is a user journey. I think it is useful as a concept to think about journey as
opposed to products. It can go any number of ways, how do we support people to be best equipped for
the journey. It is a different mindset in terms of building, developing or nurturing online functionality.
PAUL HODGKIN:
When we came to this research, I certainly thought that the red stuff was where it would write this.
That was where the really important stuff happened. On a learning level, that is where individual
transformation takes place on the sites, so people suddenly realise what is happening, finish and see
how they are perceived as patients or whatever.
And if the other side as well to see the intimacy. You can't get on on a single site. That is why there is

not much in the middle. We concentrated either on forums or community sites or organisational
websites. So we need to think very creatively. I think a lot can be done to do that. It is not we haven't
done it, but the solutions are difficult, about how you build the user journey from taking people to the
scalable, cool internet site to the warm.
BEN METZ:
Shall we go to opportunities? I think so. That is a transition side. It was an 'a-ha' moment. We thought
it was not the design principle or opportunity, it is more a way of being. We are still figuring that one to
a degree.
PAUL HODGKIN:
At this stage of the field, pluralism, business models, technical architectures and design solutions that
accommodate difference and it is, I guess this is aimed at, really, in part of my head, people like NHS
England who understandably think that if we through enough money at it from the hierarchy we should
be able to solve this. I think this disables them and nobody knows the solution. We need plurality and
diversity in order to solve this.
This comes on to the next one about financing. It is not throwing lots of money to find the next unicorn.
It is about meta-capital as a metalevel solution. How do we define a set of governance. Work across a
lot of these. Hopefully educate people about the issues.
BEN METZ:
The reference point that got us thinking that this was Apple's research kit. It is not quite a meta
architectural intervention but it is close. Research kits allow you to build apps that do health and health
care research. You can gather data. What it is actually is a proprietorial play so that anyone using the
health board has to use an iPhone rather than android or any other phone.
People looking for the next unicorn to exponentially grow whereas the smart money needs to go into
architecture that supports a myriad of different pluralist, clustered, small-scale, intimate online help
communities to develop so that over time the right set of functionality, online communities, platforms,
journeys can develop.
Meta capital does not need to be big, it might be big, it is about what people are expecting back from it.
It is not an exponential return, it is an exponential growth in functionality and options for people
building online health communities.
PAUL HODGKIN:
That is Ben's experience. Let's skip over the last one. This is our last slide. There is a thirst within the
NHS for new stories about change. That sounds trite, but people now understand the uses, pros and
cons of KPIs, cause quasi markets, sticks and carrots. Those things do not work in online
communities.

Part of what is needed is a different set of stories about change, and how change happens. How does
it happen in this chaotic, peer-to-peer world. The stories we came up with, there is a very interesting
set of conversations going on around what you need is entanglement.
You need to untangle people with each other. The growth and the learning comes from being
entangled, clinicians being entangled in this new world with patients, together learning.
Another one which will ultimately have a huge effect and is not being heard at all at the moment, the
harder science coming out of the (unknown term) ecology evolution, evolutionary development of
organisms.
That is very hard science about how symbiosis is more important than competition. I think there is a
whole set of scientific methods in the rooms. They will be really helpful in this field once scientists
begin to recognise them. You will have scientists who have grown up with these new understanding.
That the world is a co-becoming. It is true protein networks, cellular networks, ecological networks.
There are some interesting new change stories that we need.
BEN METZ:
That is us, those are our contact details. This week I submitted the final support to the health
foundation and guys and St Thomas charity.
We still have a bit of mileage on the clock to get through, we're supporting a small number of
organisations to think about how they apply these findings in online health communities.
We're doing a series of blogs and articles, there is one on Paul's website, one of the guys from St
Tom's website, we're hoping to get into the Guardian. And we're thinking through about how we might
take this forward, do you run a staff College, revised and advisory service, do we just keep prodding
from the outside? Really interested in hearing your thoughts about the work, and also your thoughts
about how we might configure what we're doing to best assist people looking to about develop online
health communities.
SPEAKER:
Thank you, Paul and Ben. We have some questions in the chat room. There is one Sarah has asked
which is around online privacy. If you have helped professionals coming on and sharing their stories,
how can we assure participants that those clinicians and staff that their privacy is going to be
respected. That it is a safe space to share.
PAUL HODGKIN:
Thank you, Sarah. In our view, it is a subset problem of the social world at large. How do you manage
your online identity? On the resources page on our website there is a reference to book by Alan
Barrack, a psychotherapist, it is about psychotherapy in an online world which I think might be helpful
to you, Sarah.

He is talking as a psychotherapist about how to manage that. The effect of online work, where people
can see his profile, you can see their profile, they have suddenly discovered stuffed about him he
would never have disclosed as a psychotherapist.
I would say go there, and have a look at that book. It is not straightforward. You are not alone in this.
You set up a different online persona, never the twain will meet with your real persona, or you reveal
online the stuff you're comfortable with, and accept that if you reveal anything, it is quite likely that
people can find out more about you.
And that might be uncomfortable. There are no easy solutions.
BEN METZ:
Sorry, that was me typing. I will try and stop myself typing.
SPEAKER:
Some important contributors throughout the chat room. Kate, what is happening on Twitter? Just
before you comment, there is something about (inaudible) sourcing and how important that is in the
online community.
BEN METZ:
What do you mean by online sourcing? Paul will be able to tell you about Patient Opinion and how
important it is to keep your comments open. However, the groups we have talked to, privacy is an
incredibly important driver. It is not like Trip Advisor where you want to rule until you have had a bad
experience in a hotel.
When you have had a positive or negative experience around a condition that is a fundamentally
private thing. You want your mum, your dad, your partner, and that omission to know.
PAUL HODGKIN:
I also think the question about open sourcing data for research, and people who are volunteering their
data, what do they feel about that going optimally to make money? That is a different aspect of online
which is changing very rapidly.
Somewhere in all of this it is likely that block chain, the new technology that underlines Bitcoin will play
a part. There was a very interesting paper in the last couple of weeks from a GP in Cambridge whose
name escapes me, talking about how you can use block chain to allow people to give their data to
research programmes in a much more secure way, that would include them fundamentally as an equal
partner in that.
It is interesting to think that Estonia now has all it electronic health records underpinned by block
chain. It is not just the technology source open, but is the actual data handling, the contract between
me as a citizen and the state providing healthcare, or the organisation research is likely to change
fundamentally because of block chain.

BEN METZ:
We have had these conversations about block chain. It has the potential to do some really interesting
stuff. The idea that block chain as a mechanism to quantify trust is going to be useful, I think, is
fundamentally problematic.
Trust, by its very nature, is an intimate experience. And not something to put into a ledger.
PAUL HODGKIN:
Anything else from the chat room?
KATE POUND:
Lots of listening going on today, Twitter has gone a bit quiet. There were a few questions, if I start with
the first. What practical steps can we do to develop online platforms? Do you have any tips for
guidance to help start people off?
PAUL HODGKIN:
(inaudible)
KATE POUND:
There is a mixture of people on the chat who are patients, advocates, managers, clinicians. If you are
that enthusiastic person with a passion to start a platform, what would you suggest as a good starting
point?
PAUL HODGKIN:
The first thing to recognise is (inaudible) an organisation to facilitate it happening. I think you start
looking for inspired individuals, both patients and commissioners in the area you want to work with.
And taking a deep breath and giving a moderate resource, roll with it and see what happens. Try and
work to become entangled with them, if you want to use that metaphor, but not control them. That is
going to be uncomfortable, but yes, you can do it.
You might find organisations out there who are already trying. If you are commissioning one of the site,
look at their values, look at their business model, and don't not think those two are independent, if you
think their values or their business model are not right, and the business model will take IP from you or
patients. That is a warning sign.
There are some relatively straightforward things you can begin to think about that are different angle
beyond, "Let's commission a site to do x."
BEN METZ:
I would add to that, as and when you find those people, find some people not inside the NHS, and get
them to talk with the inspired individual you found. Paul would be one from Patient Opinion, Michael
Ferris would be another. (unknown term) who started IBD relief.com.

People who have actively been that inspired individual, navigated the challenges and built something
which has meaning to other people. Get them sitting down in a room with those inspired individuals.
Watch, learned and get out of the way.
PAUL HODGKIN:
Think about the business model from day one. You won't find the business model from day one. But it
is important to them, who is going to pay for this in two years' time?
BEN METZ:
Included in the business model is volunteering and intrinsic motivation. It is not just about where the
money comes from, but where the resource comes from. Those are practical steps from the manager's
point of view.
KATE POUND:
I think that leads into one of our other comments, and that is what other downsides of online
communities? Is funding one of the key downsides, are there any other things to consider?
PAUL HODGKIN:
A good question, one that we touched on was that they don't scale. Some of the early promises they
had, or people had, I certainly had about them not delivering. Unless you can navigate the two halves,
use the journey between the emotional and transactional type of site, you will be forever replicating
small communities which tend to fracture.
Do a great job, but they're not going to scale that much. They obviously can be quite destructive at
times as we know from other aspects of social media. It is a problem in online health communities, but
it is rather less of a problem because of the contest. People come to these sites and Ultra stick, giving,
"I have really suffered I want to help" type of mood. We had to remove a racist or obscene comment in
only one occasion. It did not need moderating from that point of view.
People were trying to help. There is a huge wellspring of altruism. It is not representative that people
are going to turn into trolls, and do terrible things.
KATE POUND:
I have just one more question. I have Helen on standby in case you have further questions she wanted
to ask. My final question from Shirley, like the question of honest brokers but who are they and how do
we identify them?
PAUL HODGKIN:
You talk to them and look at the trilemma of money, trust, values. We all talk about our rhetorical
values, which are important, but they are not what we do in actions. Values in action of what you look

at. Look at the track record. Look if they have done something online. See how they handle typical
interactions online. You can see whether they will be good people to run the community side of things.
A really good question is, is it for-profit? Leave behind the intricacies of that, but if people are trying to
make money and they are going to set it up to become a unicorn, to sell onto someone else to make a
lot of money, there's nothing very wrong with that but it is a different set of motivations.
If you can get a lot of people to say they want to pay the mortgage and not get burnt out and spend the
rest of my life doing it, it is what I am passionate about, that is the sort of motivational Rubicon that is
worth thinking about.
BEN METZ:
I would add to that, having an understanding of that trilemma, an acknowledgement of it and trying to
engage and make sense of it. Not necessarily finding a solution, but I think there really is one. Not a
single standard.
PAUL HODGKIN:
If I think of a manager trying to commission or on a service across a hospital or a local network, there
is a great tendency because of the pressure of time, I have got this money, let's go on someone and
we will go to procurement and they will build us the site. If you are going to do that, think about the
trust community have and why should people visit your site.
Go from a pluralistic approach and do something small and quick rather than spending all your money
on a single site and nobody comes. Or people get distrustful because the motivations are not right.
JANET:
That is really interesting. What about sustainability? Many managers are keen on that, how can we
sustain the engagement? If we need to think small first of all, maybe we have to have a focus on
sustainability.
BEN METZ:
Within the (unknown term) commission, coming up got with sustainable development, there were
many versions of sustainable. We have an idea of intrinsic motivation, an army of passionate
individuals wanting to make a difference. If you are talking financially, that is the main way in which
you spin down costs.
How you meet that cost, I would like to think that over time we will be able to see causal linkages
between online health communities and online savings. Hopefully someone wait at the top, Simon if
you're listening, someone at the top of the NHS might be able to see that and put the research
mechanisms in place to build the evidence that says it is clear that for every person who engages with
your site, there is a cash cost saving to the NHS of X.
We can make that part available because everyone wins, that would be my reductionist view of it.

PAUL HODGKIN:
For patient engagement, you need to think about it is how we deliver a sense of altruism fulfilled.
People wanting to help, they want to help first. They will not beat you up. They get a reply. At one
level, it is the classic "we did." The digital technology allows us to do so much more about that. Rather
than filling out your friends and family pretext comment, you actually get some feedback about that
and it is public and in some way so people can see they are part of a normative, social thing about the
NHS.
It is being clear about the conversations happening rather than just feeding into the trust dashboard. It
is good to know about patient satisfaction but it can turn patients into widgets. So you need the
technology to be right.
BEN METZ:
The good will is there. Paul that litigation. They spend in way in excess of 800 a year. The vast
majority of people who get a cash settlement, that is not their primary motive. They want redress, they
want an apology and know their complaint has made a difference. Strong situation such as litigation,
the overwhelming motivation of patients is to create positive feedback loops.
KATE POUND:
People are asking in the chat rooms the difference between online and off-line, can you do things
online that you can't do off-line? And what about audiences?
PAUL HODGKIN:
It is an interesting question. We looked at some areas about, we asked a lot of interviewees about
whether they use online. On off-line, it clearly helped. It is really productive, you don't need an awful lot
of online meeting… It goes a long way. The problem with the NHS, the meat in the real world around
the committee table at two o'clock on a Thursday and it is very boring for patients. That is not what
they want. If you can transform that off-line into something really built by trust, and then go online, the
NHS doesn't do that, it does paper-based surveys, you are then using the online forums where you
have got the off-line trust to engage with people.
It was remarkable how difficult it was to get the NHS to do this. That would be in a way of mixing online
and off-line. The generic answer to your question is there is all to play for here. We don't know enough
about the right mix, especially... We know the mix between patient groups or manager groups, but
when a manager facilitates a patient group, it is really hard to know what the right mix of those two
categories of people commenting about online and off-line, we don't know enough.
JANET:
That is very helpful. John said is where the face-to-face is where the online can be granted.
PAUL HODGKIN:
User groups are the way to go into the forum type sites. But how do you do that enough, user groups
are typically very small. And how do you get the intimacy, back to the big site and big services where
people are being seen in ways that are useful and supportive. You can think of lots of ways to do that,

a service might use an online forum and a face-to-face user group to build trust and stories and then
take that into leaflets they distribute out on links or text messages. You might want to see our digester
of what people have said about this drug or join our online forum.
There is a huge amount of that we could be doing.
BEN METZ:
In a way, online and off-line, we think of it in a different way and what people engage with as an
assemblage of different functions across multiple platforms, some of which happened to be in real life.
Rather than on a single health community or platform. It is a fundamental mind shift that we see as
essential as getting this right.
JANET:
My final question is around valuation, we need evidence behind online communities. This is another
emerging area? Another space for new thinking and possibilities?
BEN METZ:
You can see this in any number of ways. The ultimate test is whether people are using this. A true
neoliberal market approach to evaluation, you need to have a causal link to a reduction of costs and
service provision. Beyond that evaluation is…
PAUL HODGKIN:
I think there are new tools around. There are people doing this. Tools to analyse what people are
saying in terms of sentiment analysis. They have software tools that scoop up loads of comments and
say how angry or happy or pleased these people are on average. That field is moving very fast. There
will be some evaluation tools around forums you could use and certainly we did some of that work
around another most patient stories on Patient Opinion, it was very interesting.
You can see, if you are doing sentiment analysis on a user group and their comments about a
particular disease, there is the potential, it is big brotherish, are you saying we are all angry or happy
or whatever, so how do you manage those new tools in ways that manage the trust and values is the
crucial bit. Not that the tools won't be there, they are arriving there and the data is driving this very fast.
It is essential, especially in a field like health that is big enough to define its own normative rules.
We do it in a way that promotes the human half and intimacy and values of mutuality.
JANET:
Thank you both for that, I have to stop you there. I want to say thank you very much to Paul and Ben,
our twitter followers and all of those who participated in the chat rooms and all of those at home who
have helped behind the scene to make this session very fantastic. Our next session will be on
innovation, on 1 July. Watch out for that and keep the conversation going on Twitter and we look
forward to seeing you again.
BEN METZ:

Thank you very much.
JANET:
Bye.

Edge Talk: Exploring online health communities, with Paul Hodgkin and Ben Metz

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Edge Talk: Exploring online health communities, with Paul Hodgkin and Ben Metz