The Zen of Interoperability

I was having a discussion with a colleague this week about architectural options for some specific interoperability use cases we are tackling.

The conversation touched on implementation choice – how much flexibility should there be in how to approach specific interoperability use cases within the NHS?

I’ve thought about this quite a bit, and struggled with the complexity that “many ways to do the same thing” can introduce. I naturally found myself quoting PEP 20 — The Zen of Python | Python.org.

Specifically:

There should be one — and preferably only one — obvious way to do it.

Could this be a reasonable principle for us to take with NHS interoperability?

I wonder if there is a place for “The Zen of NHS Interoperability” – to define some guiding principles for all of us working hard to make interoperability useful for the NHS.

Here is a slightly tongue-in-cheek attempt at a “Zen of NHS Interoperability” 🙂

The Zen of Interoperability

Elegant is better than messy.
Explicit is better than implicit.
Simple is better than complex.
Complex is better than complicated.
Open is better than controlled.
But controlled is better than proprietary.
Readability counts.
Special cases aren't special enough to break the rules.
Although practicality beats purity.
Errors should never pass silently.
Unless explicitly silenced.
In the face of ambiguity, refuse the temptation to guess.
There should be one-- and preferably only one --obvious way to do it.
Although that way may not be obvious at first unless you designed it.
Now is better than never.
Although never is often better than *right* now.
If the implementation is hard to explain, it's a bad idea.
If the implementation is easy to explain, it may be a good idea.
Clear Standards are one honking great idea -- let's have more of those!

NHS Hack Day 17 – Manchester

A short blog post about NHS Hack Day and why it’s worth attending.

"NHS Public Data" team

I have just spent the weekend at NHS Hack Day in Manchester, hosted by the Co-op in their new tech hub The Federation.

I wrote this blog post with the primary intention of sharing with my colleagues in NHS Digital to hopefully encourage some more people to get involved – but I don’t think there’s anything here that doesn’t apply to everyone.

It was a brilliant weekend, and there was a super mixture of people there – plenty of healthcare professionals, IT professionals, some senior management types (CIOs / CCIOs), general “techies” (professional, aspiring, and amateur), researchers, and a lawyer.

"Mobi-Alert" team

What’s NHS Hack Day like?

For those who aren’t familiar with NHS Hack Day, it goes something like this:

The event runs 9-5 Sat and Sun

Lunch is provided on both days and hot drinks are available throughout.

Saturday morning is spent using coffee to recover from the work week, chatting with people, and pitching ideas.

Pitches are 2 minutes each and you can pitch anything from a solid idea to an open-ended question (this time we even had someone who wanted to create a sci-fi story about healthcare in the year 2100).

Most people are nervous

Some people only decide to pitch an idea whilst watching the other pitches – the team that won last weekend only decided to pitch after getting confidence from the other pitches.

After pitching everyone has some time to go and talk to the pitchers, explore the ideas, and gradually teams are formed around the projects. Sometimes ideas are merged together, sometimes they’re split off into smaller projects.

The rest of Saturday, and most of Sunday is spent working on projects 

Different people work in different ways; some teams like to stick the headphones on and just chip away at a problem and others will spend a lot of time working through problems interactively. 

Sometimes people start building software etc. in the first hour, sometimes people don’t build at all.

On Sunday afternoon teams decide if they would like to present their project to everyone else – and if so submit their projects

This is completely optional, but it feels good and is encouraged – the community is friendly and rarely does a team not present something.

"Trendy" team

At about 15:30 everyone gets together and watches presentations

Each team gets 3 minutes to present their work, and 2 minutes to answer questions.

I’m always amazed at what people have managed to prepare – last weekend we had a Fresh Prince rap from one team, and a promotional video from another…

I had several conversations with people where they were not sure where they were expected to be in terms of progress at various points through the event. Superbly, there is no right answer.

The presentations are one of the most enjoyable bits for me – and last weekend had me smiling throughout every single presentation. There were so many great ideas, and every team had something interesting to show.

Teams will present anything from some paper mockups and a bit of narrative through to a fully working product with audience participation – it is dependent on the type of project, the team, and how good people are at getting up on Sundays mornings.

IMG_0030

After presentations, there is a short period of evaluation where either a panel of invited judges, or the community, will vote for the top three projects – and those teams are given some prizes

We tried a new approach to voting this time where the community was given 3 votes each to vote for the three projects they were most excited by. We trusted the community to not vote for themselves, and to only vote three times – this simply doesn’t need policing.

People then help put the borrowed space back to how it was found, and head home feeling enthused 🙂 

The last 30 mins is spent clearing up, saying goodbye, exchanging contact details, plotting world domination, and just generally wrapping up an enjoyable weekend.

170716-DSCF2913.JPG

Why should I care?

If you’re thinking “well I’m sure you all had fun, but does this matter to me?”, here are a few of my thoughts:

There is absolutely no ‘right skill set’

In fact I shouldn’t need to explain that diversity always wins and this certainly includes diversity of skills.  The best outputs come from the teams with the most diversity, and there is no buzz quite like building something with a diverse team of techies, healthcare professionals, artists, and users.

On our team, we were all learners in one way or another so a large amount of our time was spent pairing, learning, explaining, and discovering – this is just as rewarding as having something shiny to present the end of it.

This type of event is unconstrained thinking at its absolute best

As an embittered and tiring NHS technology person, I go to these events to recharge my batteries. This kind of community is not subject to the organisational, political, and learned behavioural constraints that many of us are.

It’s incredibly rare that a pitch is binned because “we’ll never get it through the <insert your favourite bureaucratic restriction here> process” – people are there to busk and solve problems. The concept of a political mandate, or a 4:1 return on investment simply isn’t important here.

The ideas and outputs from these events are a map for the future

Maps are so useful – we are all pretty convinced of the benefit of roadmaps, and visions, and Google maps.

The ideas at these events give us a clue about what is around the corner for NHS technology. Many people at these events are recently qualified healthcare professionals, or are maybe only involved with NHS technology as users and see this as an opportunity to have a voice.

The things they want, and expect, are clues – to what we should be thinking about, to where we should be going, and to where we’re falling short.

It helps prove that the centre can engage, listen and help

Do not read subtext into this – I am not saying “NHS England / NHS Digital never engage with the community”.

But it should not raise eyebrows at these events when one says that they work for NHS Digital, or NHS England – people are, but shouldn’t be, pleasantly surprised.

Last weekend I think I counted the number of attendees from NHS England / NHS Digital on one hand – I’d love to see this go onto two hands.

People are enthused to see us there, and actually we can be really helpful as guides, navigators, and mentors. It encourages innovators just to know that we’ve considered it of value to take time to be there.

It’s not just about AI and mobile apps – people solve fundamental problems too

One of my favourite projects from last week: FastPass. A team of seasoned IT support professionals who were determined to sort out the drag of password resets – both for support staff and users. They built a working system for self-service password resets and they intend to take it forward within their local NHS trust.

My team tackled the challenge of collecting timely feedback from users of NHS services at a scale that would produce enough data to be significant.

Real problems, not flashy, that could genuinely make stuff better.

IMG_0025

In conclusion

Next time there’s an NHS Hack Day near you, try and get along – if only for one day.

If you don’t like it then fair enough.

But you might do, and you might find it leads to you bringing a better, more energised self back into work the following Monday – and that can only be a good thing for your own organisation, and the NHS.

Visit http://nhshackday.com/ for more information, or follow @NHSHackDay on Twitter.

If you are interested, and would like to ask some questions feel free to drop me an email at matt@stibbsy.co.uk or @mattstibbs on Twitter – I’d be really happy to tell you more.

Appointment booking in Urgent Care

Introduction

This is a collection of my thoughts about the challenge of improving appointment booking within the urgent and emergency care sector. It has a fairly technical focus and may well lack context for people not so familiar with the field.

I also want to explicitly acknowledge that this post does not examine user needs in detail as it was originally intended to support technical consideration – it doesn’t replace or negate the need for properly understanding the needs of users both professional (within the NHS) and public (users of the NHS).

Some background

Out of hours care has always had the concept of appointment booking for patients that need contact with a clinician from an out of hours service – this could be a face-to-face appointment at a local out of hours centre, or an appointment for a telephone consultation with a clinician (although this tended to happen less).

Prior to the introduction of NHS 111, out of hours care was generally provided locally (i.e. a patient would contact an out of hours service local to their area), and so booking of appointments was handled internally within the same organisation or with local arrangements between specific nearby services.  In the majority of cases the transactions would all happen within the same IT system.

NHS Direct was a service that operated at national scale, but they did not offer appointments for patients; you would either receive a callback from a nurse, or NHS Direct would pass your details through to your local out of hours service which would then make contact with you.

With the introduction of NHS 111 in 2013, urgent care in England moved to a ‘national service delivered locally’ model. This model made use of national telephony infrastructure to route telephone calls to 111 through to different call centres around the country. In the vast majority of cases, 95% of 111 calls would be routed to a NHS 111 call centre close to the location of the caller using either an approximation of the landline location, or an approximation of a mobile phone using mobile mast triangulation.

Call demand on NHS 111 is incredibly ‘peaky’ – you can see this from the openly available monthly datasets that are published by NHS England. Particularly busy times for urgent & emergency care are long weekends (e.g. bank holidays), Easter, and Christmas / New Year – this is a well understood demand pattern in the NHS.

The challenging aspect of these few ‘super peaks’, however, is that they are several order of magnitudes larger that the regular weekly peaks (which general happen on Saturday mornings around 09:00 to 11:00). In terms of managing and planning for demand, this poses an immense challenge for services for whom simply ‘getting all of your staff in’ isn’t guaranteed to cover it.

An advantage of the national telephony approach is that it allows NHS 111 to distribute incoming calls flexibly across the country – this provides significant contingency for a range of situations (be it a particularly high demand in a particular region, or maybe a significant incident inhibiting the ability of a particular region to handle the local demand).

How does this relate to appointment booking though?

One impact of moving to the national service model is that it introduced a separation between the services handling telephone calls, and the services providing the appointment-based care to patients; in most situations this means separate IT systems are used too.

NHS 111 has been making good use of nationally-standard interoperability since its inception – this allows services to provide safe clinical handover of a patient between services (i.e. an NHS 111 service handing a patient over to an out of hours service so that they can provide further clinical care), however to this date there is no national standard defined for appointment transactions.

The supplier market responded to the gap by building appointment booking interoperability solutions for their customers which augmented the existing nationally-defined clinical handover interoperability – these solutions fill an important gap and several years on these solutions are used fairly widely both within the urgent care sector (e.g. between NHS 111 call centres and other urgent care services) and more recently between urgent care and general practice (GP surgeries).

Existing capabilities

The existing proprietary solutions are already becoming more widely deployed, and will continue to be deployed more and more as the urgent care system moves towards its aspiration of facilitating appointment booking into services for all patients (see the Next Steps on the Five Year Forward View or my precis of the urgent care specific elements of the FYFV). Given the relatively short timescale of the FYFV aspirations, and the fact that we don’t yet have a broad enough, nationally-defined standard for appointment booking interoperability using proprietary solutions in the short term remains a valid option.

There are some limitations to the existing proprietary solutions, and there is a common list of issues and gaps that service providers have started to identify. Some of the limitations are with the implementations themselves often relating to them being specific to individual IT systems (this is understandable in where solutions have been driven by the competitive market and have grown organically), other issues are related to the fact that there is some coordination needed across different services and regions which cannot realistically be provided by market-led proprietary point solutions.

Implementation of proprietary solutions could also increase the implementation cost in the long-run as it generally involves licensing on usage which attracts a cost to the users. There is also a coordination overhead that comes with the rollout of any proprietary point solutions. Having said that, the ROI is still considered to be favourable for investing in these existing capabilities in order to move interoperability between services on from where it is now.

Existing interfaces generally provide the ability to query slots of a destination service, pick an empty slot for a patient, and book an appointment into that slot. In some cases it is possible to change or cancel that appointment whilst still within the initial booking journey. Some systems have integrated the appointment booking transaction into the wider urgent care workflow, linking the appointment directly to the clinical handover (using the CDA documents that are sent between services). The official Integrated Urgent Care CDA messages have a section that allows systems to embed appointment reference details for the purpose of linking up with appointments within their system. There is a mixture of business rules applied by the various systems involved that guide how appointments can / can’t be booked, and what data items are required to do so. Some suppliers have attempted to build on top of existing proprietary solutions to avoid further divergence but this does mean building on top of existing limitations as well.

The biggest gaps are currently:

a) a lack of clearly defined appointment booking workflow that can be applied consistently across all services

b) a lack of an appointment repository / index that allows services to easily find out if and where a patient already has an appointment booked

c) a lack of business rules around how appointment booking should be handled when happening across regional borders (introduces financial, political, and accountability challenges)

So what comes next?

System suppliers and service providers alike have asked for standardisation of the appointment booking specification for urgent care and emergency care (note specification covers both an API specification and the associated business processes that support it).

There are a number of benefits from standardising the specification:

  • it will reduce the implementation cost for both system suppliers and service providers through use of configuration over installation, and less variability related to the IT systems in use;
  • it will introduce consistency of workflow across services and therefore ultimately improve consistency of experience for the users of the services (i.e. patients)

What about the existing systems like eRS and GP Connect?

System suppliers have been very clear that in order to realise the benefits of standardising the interoperability for appointment booking it is important that we don’t simply introduce YAAS (yet another appointments system). In particular alignment with the existing GP Connect work is preferred.

The key is in the user needs and the fact that nothing exists currently to meet all of the user needs in urgent and emergency care.

A drastic over-simplification of the use cases in urgent and emergency care appointment booking is:

  1. An urgent / emergency care service booking an appointment into general practice (a patient’s GP surgery)
  2. An urgent / emergency care service booking an appointment into another urgent / emergency care service

GP Connect is currently focused on enabling the first of these: booking an appointment into general practice (and specifically only the IT system suppliers that are part of the national GPSoC framework) – it therefore could help to meet some of our user needs in urgent and emergency care, but not all of them.

The e-Referrals Service (eRS) (formerly known as Choose and Book) currently targets a different set of needs: primarily referral from primary care into elective care* services (e.g. your GP referring you to a specialist in a hospital). The sort of workflows that support eRS use cases are quite different to what we need in urgent and emergency care with a key example being the respective definitions of an urgent appointment: in elective care this means 2 weeks, in urgent & emergency care this might mean within 1 hour.

In both cases there are IT systems in urgent and emergency care that do not already have integration with either GP Connect or eRS. This does not mean that neither can be of use, but it does mean that neither can provide what is needed in the current form.

Some specifics

The following notes were made whilst summarising some key characteristics of appointment booking in urgent & emergency care – they are highly likely missing context and are not exhaustive…

Appointment types (e.g. routine, urgent, 1 slot 1 patient, 1 slot many patients, not date/time bound, etc.)

Urgent care appointments are generally specific time-based slots i.e. come to x place at 20:30. In most cases a single patient will be booked into a single as would happen at a GP surgery, but busier or higher acuity services may utilise group slots i.e. come to x place at 16:00 and you will be seen around that time – this helps manage high demand and the general challenge of keeping to specific appointment times in dynamic services such as healthcare.

The urgency of an appointment tends to be denoted by the ‘disposition’ – a term which represents the concept of a timeframe within which the patient needs to be seen (e.g. must be seen within 6 hours) combined with the general type of care the patient requires (e.g. see a clinician, see a dentist, see a pharmacist). When a disposition is derived for a patient the ‘timer is started’ with regards to the timeframe.

As mentioned above, there will be variety in the types of appointment patients require e.g. it might be with a mental health specialist, with a nurse, they might need a clinician who specifically can prescribe medication, they might need to see an emergency dentist.

There is a mixed model of how this is provided: some service providers will supply several types of appointment, whereas other specialist providers might only supply one type (e.g. an emergency dental provider might only supply emergency dental appointments).

Slot management (publishing, synchronisation, ownership, etc.)

All existing models within urgent care use real-time slot queries to get availability of appointments. At the busiest periods even this can result in appointments becoming unavailable between the initial search and confirming it with the patient – this is not unlike the high-demand ticket-booking scenario. Demand on services can fluctuate rapidly, and services maintain the ultimate control over the appointments they are making available; it is not unheard of for a service to remove some availability when they see an influx of patients to prevent running over-capacity.

Ultimately the services providing the slots have ownership over what they do and don’t make available – there are some political complications if the service providers are contracted to provide a certain number of appointments for instance, but this is a separate detail.

Services will sometimes make slots available for certain types of patient, and have to manage their slot allocation carefully so as to avoid using all slots within the first hour of opening – they have an obligation to continue to provide a service during the out of hours period and so they have to apply demand predictions and spread their slot availability out. This can be done by restricting certain slots for patients with certain clinical urgency, and spreading these through the schedule (e.g. reserve a % of slots every hour that can only be booked into for patients with a urgency of < 1 hour). Another method of controlling demand is to use the disposition timeframe to filter the time range for appointments e.g. if a patient needs to be seen within 6 hours, don’t show slots sooner than 2 hours away. Obviously some serious thought has to be put into how this is all filtered and as to how they make sure they are providing an acceptable service for patients.

Who can do what? (professionals and patients)

Patients do not currently have any access to their own appointment information in urgent care, and there is no existing facility for patients to book appointments directly without first speaking to a member of staff within a service such as NHS 111.

The permission to book appointments does not tend to be restricted at an individual user level – at this point in time it is more about inter-organisational agreements i.e. can X NHS 111 call centre appointments into Y urgent treatment centre.

Generally if someone is able to deal with a patient on the phone, they will be able to take the patient through the full journey including booking them an appointment at another service. On a technical level, API authentication tends to happen at the organisational level with the authentication and authorisation of individual users remaining the responsibility of the respective systems – it is rare that Jackie Jones from Townsville NHS 111 call centre is specifically given authorised to book an appointment into Townsville Urgent Treatment Centre.

Slot mapping/semantics (e.g. slot = service, or slot = care role, or slot = name clinician, etc.)

This varies depending on the scheduling models that systems implement, and to a certain extent does it matter? Ultimately, though, slots are made available by services, and may be restricted by the type of care provided and restricted by certain patient criteria i.e. only patients who have received a certain disposition can book this slot.

There is no significant precedence of slots being at named clinician level within urgent care as staff are much more ephemeral than in other services, and encounters with urgent care by definition are not the start of an ongoing long-term relationship between the patient and service.

Managing appointments (booking, cancelling, rescheduling, recording attendance, etc.)

Proprietary solutions currently provide Book and limited Cancel / Reschedule functionality.

Cancel / Reschedule is limited because this can only really be done during the initial call with the patient i.e. if the patient changes their mind before the telephone call is completed.

None of the existing proprietary solutions support Cancel / Reschedule after the initial call has completed, and this is one of the big workflow challenges for us: how do we identify that an appointment has previously been booked for a patient if they are to call back to NHS 111 at some point after their original call. In particular considering the notes above regarding distribution of telephone calls nationally there is no guarantee that a patient will speak to the same call centre, let alone same operator, if they call back to NHS 111.

Any national approach will need to provide interoperability and operational workflows that support these missing bits.

Access to the booking system(s)

Patients do not currently have access to the appointment booking systems in urgent care.

Existing proprietary interoperability is all system-to-system  – there are no publicly-available or open APIs for third-parties to easily consume.

Monitoring/Analytics/Reporting (e.g. DNAs, unused slots, etc.)

All handled locally by system, nothing centralised at the moment. Being able to look at how appointments are utilised across the urgent care system would be a good thing to tackle, providing it isn’t at the expense of the patient experience and operational workflows.

From a data perspective, it should be possible to get decent activity information about appointment booking without requiring patient-identifiable data – this will need looking at in more detail.

 

* Elective care is pre-arranged, non-emergency care, including scheduled operations. It is provided by medical specialists in a hospital or another care setting. You will usually be referred by your GP.

Referrals vs Transfer of Care

What is the difference between a ‘Referral’ and a ‘Transfer of Care’?

What is the difference between a ‘Referral’ and a ‘Transfer of Care’?

The phrases “Transfer of Care” and “Referral” are used frequently, all over the NHS and they feature especially often when talking about interoperability between IT systems.

Sometimes the two concepts are conflated and the terms used interchangeably; they both involve passing the responsibility of care for a patient to someone else but the nature of the responsibility and the way it is resolved is different.

Here is an attempt at describing the difference between the two:

Referral

A referral is a request made by one clinician or organisation to another clinician or organisation for them to take responsibility for part of a patient’s care.

This part responsibility might be for a specific problem the patient has, or for a particular activity (e.g. medical imaging and other diagnostic tests) to assist the GP with further diagnosis.

The referral, and therefore the responsibility, will often have a defined end point – for example until a particular activity has been completed (or ‘discharged’), or until a particular problem has been resolved. In other cases it might be an ongoing responsibility – for instance management of a Long Term Condition.

Example

A patient has visited their GP because with a painful back. The GP feels that they may need some further investigations, for example an MRI scan, to find out what is going on.

The GP makes a referral for the patient to the radiology department at the local hospital asking that they use medical imaging to help diagnose the patient’s back problems. The patient is told that the referral has been made and to wait to be contacted by the hospital.

The patient receives an appointment from the radiology department. They attend the appointment and the appropriate scans are taken of their back.

The consultant radiologist then produces a report describing the results of the scan which is sent back to the GP who made the referral. This particular referral is then completed and responsibility for the next steps are back with the patient’s GP.

 

Transfer of Care

A ‘Transfer of Care’ is where a clinician or organisation passes the overall responsibility for a patient’s care to another clinician or organisation.

This is often related to a patient moving to a different stage in an overall pathway of care, or to a change in their condition which requires a different type or level of care.

Example

A patient is feeling unwell on a Saturday evening, and calls NHS 111 to get some help. They have a conversation with a nurse who feels that they really need to see an out of hours doctor in their area.

The nurse takes some more details from the patient and searches for an out of hours service near to the patient. He finds an appropriate service and advises the patient that he will arrange for them to see a doctor within the next 4 hours.

Once all confirmed, he initiates a transfer of care from NHS 111 through to the out of hours service, sending all of the details he has recorded about the patient through to the out of hours service.

The out of hours service accepts the transfer of care and is now responsible for the ongoing care of that patient.

The nurse in the NHS 111 service is no longer responsible for that patient’s ongoing care, and moves on to look a new patient.

 

Is this right? Views and comments welcome.

NHS Hack Day 16 – London

Last weekend was the 13th NHS Hack Day (#nhshd) – superbly organised and hosted in London by Helen Jackson (@DeckOfPandas)  – and the 2nd #nhshd that I’ve attended.

My first #nhshd was in Manchester last year where a small group of us hacked an idea to help medical students get access to more hands-on learning opportunities – we called it SLOT (Supervised Learning Opportunities by Text). We agreed to continue with the project on after the hack day and we’ve just started a trial at Western General Hospital in Edinburgh – we’re keeping our fingers crossed that we get some interesting results.

There have been several blogs published since last week describing what it’s like to attend a NHS Hack Day and I think they’ve done a pretty good job – so I’m going to avoid repeating the same things and link to a few of them instead:

http://www.drgrimes.co.uk/?p=206

http://itsuite.it.brighton.ac.uk/rlr17/blog/?p=215

http://openhealthcare.org.uk/blog/2016/05/20/nhs-hack-day-13/

There were many excellent ideas pitches and I was really encouraged by the number of ideas that were focused on making a tangible change to the way and ease with which people can do their work.

I arrived with no preconceptions about the type of idea I would work on – only that I would actively avoid anything that was focused around sending people text messages (I’ve hacked around this a few times now).

I was particularly excited by a couple of the ideas:

  • The first was an idea to hack a real anaesthetic machine (brought to the venue) to get data from it directly and do useful things with it – we were told that currently information is normally transcribed manually from the machine to the patient records.
  • The second was an idea to hack an easily-deployable patient observation system which can be used in the field during health emergencies where you don’t have reliable power and connectivity – the example used was the Ebola virus epidemic in West Africa where using paper to record observations was both impractical and an infection risk.

The idea that I was ultimately drawn to was from Adhiraj who is a consultant child and adolescent psychiatrist working in London. He described a frustrating situation faced by clinicians working in mental health all over the country. We ended up prototyping a solution to help locate available mental health beds, and automate the process of requesting and accepting referrals.

We managed to demonstrate a working prototype by the end, and were lucky enough to be placed in the top three by the judges! A very satisfying end to the weekend 🙂

 

 

Oi, that’s my personal data! (Why aren’t you sharing it?)

lexij_2015-Nov-28
@lexij: “Health data: found a solution”

At UK Health Camp 2015 #UKHC15, I joked that a session about digital in healthcare will always end up as a discussion about the sharing of personal data. Many a true word…

This happens a lot; three of the sessions I joined at #UKHC15 at least featured a discussion about the sharing of patient data – about how important it is to share it and also about how to make sure it is shared in the right way (ownership, governance, protection etc). It clearly (and appropriately) matters to us.

@thatdavidmiller made this point after an enjoyable (and lively) session towards the end of the day:

Screen Shot 2015-11-29 at 12.12.08

Screen Shot 2015-11-29 at 12.13.02

 

I don’t agree that “debating ownership rarely helps” as we mustn’t devalue that particular conversation, however I agree with the sentiment – it is true that at the moment it rarely gets us any further forward; it feels like the ownership conversation has been going in circles for years now.  

Some projects across the country are starting to make progress in breaking down the data-sharing barriers but the reality is that piles of Information Sharing Agreements still exist just to support sharing within a single locality – that model of applying governance is absolutely not scalable.

I think the reason we’re stuck in this conversation is because we actually can’t answer the ownership question with what we know at the moment. The (read wider NHS systems, not just IT systems) we have in place today. We know that people should have control of their data and access to their data, but this doesn’t automatically equate to ownership and the risk is that ‘ownership’ becomes a catch-all term for ‘the intricate aspects of personal data, ownership, control, permission, etc.’

So maybe we need to put our current conversations about securing our data on the back-burner for a while, and have some conversations about what ‘comfortable’ might look like for users.“Revokable, Open & Transparent consumption of data,” are the sorts of things we should be talking about.

As @thatdavidmiller said, “Revokable, Open & Transparent consumption of data,” are the sorts of things we should be talking about. I’ve often imagined some kind of intuitive ‘data dashboard’ that people could use to manage their personal health data, however the complexity of the NHS structure and of people’s personal health data is such that I can’t see a straightforward route to it.

During the UKHealthCamp2015 session ‘Hard problems like care records, identity, consent’, @sheldonline briefly showed some prototype data sharing permissions screens from the GDS Government-as-a-Platform (GaaP) work and someone (I can’t remember who in order to give appropriate credit) highlighted that Facebook, Twitter, and many other online services that hold personal data already give users the ability to view who has used our data, and revoke permissions in a single click of a button.

People do broadly understand how to use these systems now – although it’s been a challenge for organisations like Facebook to make it simple for users (Google “Facebook privacy fears”) hence the fourth Government Digital Service design principle “Do the hard work to make it simple”. So maybe in health we should be looking to social networks for inspiration for how to make this work for users of the NHS? If it’s an ongoing struggle for Facebook it isn’t surprising that it’s hard for us in the NHS – can we avoid duplicating effort solving this problem where other organisations have already spent millions of pounds?

I’m not ignoring the differences between the NHS and a social network (not least the fact that social networks have all the data in one place) but when the conversation we’re having is about sharing information, social networks are up there in terms of experts.

I am certain that some of the ideas coming from the Government Digital Service and the rest of government around sharing personal data between different agencies are way beyond this in terms of thinking. I’d be really interested to see some more research in / with the NHS about what it might look like for people to manage their own health data – to see how much influence other digital services such as social networks have had on their thinking. If we can move the discussion on to: “What might the control and visibility of our personal health data look like?” some of our repeated conversations about data ownership and protection would also move forward.

We need to learn from the evil suppliers (at least some of them)

Events like UKHealthCamp give you an opportunity to meet lots of cool people who are on a mission to make a real difference in healthcare using digital.

I’m currently working with NHS England doing exciting digital things but have spent a large part of my career working for a commercial software supplier to the NHS –  for this reason I’ve often been quick to fly the ‘suppliers aren’t all evil’ flag (#notallsuppliers #notallevil). A lot of the time, I’ve met a fairly defensive reaction to this.

It’s worth clarifying that this is absolutely not a post in defense of big software suppliers, and the message is not intended to be “big suppliers are the answer to our digital health needs” (likewise it’s not saying they can’t be) – it is simply acknowledging the fact that they are a significant and established part of our digital health economy. Sometimes, when we’re trying to change things in a big way,  ‘the behemoth suppliers’ become only a representation of what we are desperately trying to get away from, and their place in our discussions doesn’t extend past a punching bag for our criticism and utter disbelief.

If you talk with many of the people who are trying to change things in their field/sector/locality, their stories often feature a chapter like:

We’ve asked our current supplier to make some changes – they said they would do it but two years later it still hasn’t happened.

We tried talking to our current supplier but they just weren’t interested and it wasn’t a high enough priority for them to do anything.

Unsurprisingly, people are disappointed by this, and it just leaves people even more determined to do something better in spite of the suppliers.

Hardly any large software suppliers have entered the NHS market within the last 5 years, maybe even the last 10. The systems that are now handling millions of patient encounters have years’ of development behind them – years of code, years of complexity layered on previous complexity, and at least 3 significant rounds of NHS re-organisations requiring renaming or translation of entire database schemas because a table labelled

tblPrimaryCareTrusts

in hindsight should have been labelled

tblGenericFluidlyNamedNHSLocalisedWithVaryingLevelsOfCommissioningResponsibilityEntities

This is absolutely not to suggest that all long-running systems are long-in-the-tooth – far from it in a lot of cases – but anyone who has created or maintained complex applications will relate to the fact that the longer an application has been evolving for, the more history there is to consider.

None of this excuses how hard it is to change things – definitely not in fact – but we do need to be careful about dismissing their collective experience.

@lexij pointed out to me:

“You have a great idea to solve some problem, and so you solve it, and then someone with that problem wants to pay you to solve it for them, and now you have a paying customer and a contract, and then more people want you to solve the problem for them too, and now you have more paying customers and more contracts, and then someone’s problem changes slightly and they want you to change how you’re solving their problem, and you ask them to complete a change request so that you can control the impact of the change, and now you’re an evil supplier.”

Every supplier, at some point, started by doing something different and solving a problem for someone.

The NHS is starting to understand how important it is to properly discover the problems that need solving – what is the user need? Pockets of (what I consider to be) better practice are appearing all over the digital health community, and high profile digital projects such as the NHS.UK Alpha are demonstrating how better practice can be applied to real needs. This helps to establish a legitimacy for these practices that in turn provides cover for more pockets of better practice to appear. As part of this important research we accept that we need to understand both what and why and I believe that to help answer the why we need to learn from those who have been at the cutting edge before – those who are already trying to solve the problem and getting there. They may well know why they can’t respond to these needs. So as a suggestion, how about we have some conversations asking:

“Why can’t you change your system to meet our need? Do you agree that it is a valid need? If not, why not?”

“What would have to happen so that you could change your system to meet our need?”

“What things stop you from being able to rapidly adapt? Why aren’t you getting ahead of the curve?”

I think we’d probably get some answers including phrases like “fixed contractual deliverables, contractual penalties for not delivering x and y, too many higher priority requirements already in the backlog, no clear return on investment, no clear sign that people need it…..” and many more. Surely all suppliers aren’t just so lazy that they all work from the same list of ‘excuses’ are they?  There’s more for us to understand here – we might just be responsible for creating this inflexible environment.

Clever people are looking after these well-established products, and as @lexij also pointed out

“they’re just people – people who just happen to work for a commercial software supplier”

I’d be surprised if they didn’t have some useful perspectives on this stuff, and if we can try and capture some of that experience in our discovery we will almost certainly be more successful in changing things for the better.