We have been hearing alot about the Patient Revolution since the Coalition came into power in 2010 with plenty of political zeal currently added to the Friends and Family Test (FFT), which is David Cameron’s ‘gift’ to the NHS. If you need to refresh your memory you can find more details here.

I believe we have to be realistic and say that the friends and family test may play a part in a revolution but it is not ‘the revolution’. In fact, unless there is an improvement in the way patient feedback systems are implemented and the way the information is shared, to fit with openness and transparency, we will be making it harder for patients to be part of the revolution.

I have been a keen advocate of open data and online patient feedback services such as Patient Opinion while at times contributing to the development of a small number of services. During the last few years we have seen an expanding online patient feedback ‘industry’, which on the one hand it’s great to see competition, while in reality I feel it creates confusion for patients and a watering down of numbers of individuals contributing.

The friends and family test has the potential to cut through this busy market and offer a way to gather patient feedback both at a localised level as well as in sufficient numbers. I do have concerns (well 3 concerns) over the initial pilot that has been running in the Midlands and East Region. My concerns relate to the way the test will be implemented, the way the data is presented and an apparent overall lack of strategy to work with other feedback services.

During the initial Ipsos Mori consultation on the FFT “…it is also worth noting that the public did not appear convinced that this was a necessary measure – with comments about the cost of implementing, and also that they would tend to rely on GP recommendations, or other data, such as mortality rates, to decide which hospital to go to.”

The friends and family seems to be driven from top down political agenda and without openness and transparency in the way it will be implemented before we can say revolution. If the test is not evaluated we may see it implemented and used incorrectly, for example placing too much pressure on frontline staff instead of the commissioning process.

Current forms of patient involvement in service design often falls short of actual co-design, as the focus is mainly on processes such as efficiency savings,patient flows and pathways rather than patient experience, especially when the input from patients and patient groups (such as the new Healthwatch) seem to be getting watered down. The friends and family test must not be used as an alternative suggestions box and it is not an excuse to stop listening in public forums and other feedback systems.

Also I wonder are we witnessing a new service being launched before the pilot is properly evaluated and scrutinised, especially within an open public way? Personally I feel in the age of openness the Department of Health should be allowing others to access and analyse the raw data; to become involved in researching the effectiveness. I did attempt on a number of occasions to access to the underlying data in the pilot FFT program. While the people I spoke to at the West Midlands and East Quality observatory were trying to be helpful and not by any means obstructive, there was little in the way of knowing how to help me with my quest for accessing the open data. Eventually I got access to some of the data (at a Trust level only) via a manually downloading Trust scores month by month from the FFT dashboard.

I hope the Department of Health improve the openness and granularity of the data especially when in the same Ipsos Mori report it was stated “… if trusts are being encouraged to use the more detailed underlying data to review their performance, this data should also be made available to the public although this may be decided at a local level”.

The FFT data I managed to get hold of in all fairness is pretty meaningless to the layperson and to be perfectly honest it was hard to grasp for me. In fact I would say in the current patient feedback market there are a number of information displays that have little meaning but that is another post. With the FFT the public display was at Trust level (like one or two other services have gone for) but also was reduced to a number which without context is pretty meaningless.

For the FFT to have context and meaning we need to see the test has led to change (and not just be told this is the case), much like Patient Opinion reveals the inner workings of change happening. Personally I support the mechanism that Patient Opinion has in place which offers Trusts the ability to listen to stories, respond, make changes based on the experiences of patients and report these changes. This is an open and public service showing the inner workings of change happening inside the NHS. It’s a shame that many Trusts do not use this feature, while there are certainly many examples of Trusts, hospitals and units being more open about change happening. The new Friends and Family test seems to be moving away from the publicly visible cycle of change and moving back to closed professional led meetings.

I would question do patients know where to go to leave comments, compliments and complaints when treated in the UK? We now have numerous platforms such as NHS Choices, Patient Opinion and I want Great Care. A number of these services are attempting to merge their services however all of them seem to have separate mechanisms to engage staff in the process of listening and responding. Are we about to lose the openness gained through the freedom of information channels once fought for in PCT and SHA. It seems SHA’s have done very little to make sure that new freedom of information channels are made clear to the public in the reformed NHS structure.

The levels of perceived patient involvement in the NHS by the patients themselves remains poor at times, Trusts and patients naturally having to choose which system to leave feedback with and dedicate resources too. Out of curiosity I’ve pulled together and merged a few data sources to get an overview of how NHS Trusts measure up for listening to patients, such as stories told and listened to on Patient Opinion, Care Quality Commission scores for listening to patient views and Operational Framework scores. The scorecards can be accessed here and show patient opinion stories, CQC scores out of 10 and Operational framework % score.

Finally (and I have gone on far too long I know), patients and carers should continue to share the good and the bad publicity online through 3rd party services such as Patient Opinion. I have seen a number of NHS Trusts buying and implementing in-house patient feedback services, however I would argue this weakens the disruptiveness of feedback mechanisms; rarely does a revolution happen when the institution controls the lines of communication. I believe using social media, 3rd party feedback services and open data are crucial in the patient revolution.

Monitor authorise and regulate NHS foundation trusts and are independent of central government and directly accountable to Parliament.

Information on the website describe their role as:

We receive and consider applications from NHS trusts seeking foundation status and look at three areas:

1. Is the trust well governed with the leadership in place to drive future strategy and improve patient care?
2. Is the trust financially viable with a sound business plan?
3. Is the trust legally constituted, with a membership that is representative of its local community?

If we are satisfied that certain criteria are met, we authorise the trust to operate as an NHS foundation trust.

If you visit the NHS Foundation Trust directory you can find information on how Trusts are performing. This is indicated by either using a finance risk rating (0-5) or Governance rating Red Amber Green (RAG).

I thought it would be useful to use Google Spreadsheets and pull the data from the directory and create an aggregation of the ratings.

What if we could create debate and discussion based on historical data such as council spending, health data, crime data, regeneration data even social media data. For citizens to really get stuck in with holding Local Government to account we need to understand and use open data more effectively.

We have some great examples of data from other cities being put to great use, such as Birmingham Civic dashboard and numerous others (I’ve saved a number on this channel)

Throughout my online collection of data work I have created a number of visualisations such as arts, spending, crime, health as well as writing software program’s to create databases out of the City Council’s spreadsheets (hopefully with more people involved making it easier to reuse the data)

My recent experience running hack sessions and data to intelligence work has proven there are very few people in Stoke who either have the coding skills and/or energy to put these to civic use around open data which is a huge shame. This shortage of skills is quite concerning if we are to put the masses of data to better use.

I’m currently working with an open data group in Birmingham as well as working with the Birmingham Mail’s data journalism group. We don’t have anything like is in Stoke on Trent, plenty of rhetoric but not enough action I’m sorry to say.

I’ll continue to hack, scrape, analyse and visualise data on Stoke on Trent’s City Council however my concern is without data all we have are opinions.

Within the first few weeks of the project it’s become very evident that data plays a huge part in learning for students. Whether that’s data logging experiments in physics, household survey data in social sciences or performance data in sports. So I wanted to make a list of reasons why students should have an opportunity of mastering tools to collect, tidy, analyse and visualise data.

1: Data is boring.

Yes that’s right, the majority of time spent working with data is mind numbing and rather frustrating. When you’re confronted with rows and rows of numbers and letters, there will be a need to sort through the data, in many cases tidying it up or even checking for errors. Now there are many tools that take away this pain making it easier and quicker to get to the creative bits. Tools such as Google Refine and even Excel enable you to tidy large sets of data up. These tools take time to learn which is greatly increased by having someone who knows what they’re doing to provide valuable learning support. Young people should be exposed to a variety of tools and in some cases programming languages as this makes working with numbers just that little bit more enjoyable.

2: There’s just rows and rows of meaningless numbers

For students the idea of going into class and being confronted with an endless stream of numbers makes teeth extraction sound exciting. There are currently numerous tools available to quickly visualise chunks of data and it’s quite natural to want instant gratification. In many cases it’s worthwhile quickly getting a ‘feel’ for the meaning in data and to maintain interest. Using tools like Tableau we can get a quick look at patterns or meaning in data that can lead to new questions to ask from the data.

3: Answering “why should I bother?”

A question I’m sure teachers will come across when asking students to explore data such as Indices of Multiple deprivation or other types of (open) data. Using many of the tools available we can extract the story behind the data, we can link data sets together and also bring together a range of multimedia to provide context. We can use social media, news reports as well as data to provide context and meaning to a story and give students the ability to empathise or relate to the people inside the data.

4: Data provides material for creativity

Just like an artist uses their experiences, perceptions, tools and skills to create artwork, a student could be taught the skills to use data as a means to create works of art and other data projects. Data can be visualised, made interactive and can even be connected to real world objects. Examples of this are net enabled devices such as Raspberry Pi or Arduino (aka Internet of Things) that can react to data, play music, turn lights on, The only limits are the imagination and I believe we need to be more creative with data.

5: Data is everywhere

It doesn’t matter if you want to be a footballer, singer or mechanic, data will always be a part of what you do. Students should be exposed to tools and techniques to explore and use information, whether that’s part of your fitness development, timing, coordination or ways to diagnose problems. We see data being used in many areas of business as well as websites, apps and media. Young people should be confident to use and manipulate data using many tools.

6: There’s money to be made

When it comes down to it, there are opportunities for the entrepreneur to create business from data and information. To master numerous tools and techniques earlier on will pay for itself later on in life. Many businesses have been built on developing apps, web services, advocacy services and analytical services, all require necessary data skills.

So here endeth the lesson. To summarise I feel that teaching young people to find, explore and use data in many different settings is vital. We need to teach students how to use a variety of tools and even expose them to coding. To do this we need to have data skills more exposed in the school curriculum, teachers should be encouraged to look at a number of tools and techniques. It may not be as exciting as DJ mixing but by finding ways to create with data, young people may actually enjoy the process more as well as the output.

We at bITjAM are holding a special one off Hackathon as part of the International Opendata day. We plan to bring together the finest creative minds in the area and develop something exciting using open data. We plan to hack together an ‘interactive something’ that uses open data to trigger cool things, that could be audio, visual or hardware. This could be using a hacked Kinect sensor to naviagte a map application that when someone interacts it triggers audio or something way much better than that.

The hack session will be a place to learn new stuff, play great tunes, eat pizza, meet beautiful geeky people and learn about technology that is free to use.

What is Open data?

Governments around the world have been pressurised to be more transparent. For many years certain Governments including the ones in the UK have wasted tax payers money, been corrupt or just plain stupid in the ways they deal with the country. For years they have managed to get away with this due to hiding their mistakes or dishonesty in spreadsheets and computer systems.

Over the last few years there has been a move to force Governments to share information in the form of data (called Open data) so that people can see how good or bad tax payer’s money is being spent (and lots of other things) and in some cases people can use this data to design things to create businesses themselves.

What is a Hackathon?

A Hackathon is a day where people who have a mix of skills and ideas that can design and build gadgets, Internet applications, mobile applications and games or anything that you would call geeky. During a typical Hackathon you will see people programming computers, soldering things, talking, eating pizza, playing music, laughing, learning about new stuff and just getting excited over creating things.

Who can join a Hackathon?

The Hackathon on the 23rd February is open to ANYBODY who is interested in computers, hacking, games, music production, politics, creating things, destroying things, pizza, dub step and pizza.

What do I need to bring?

You only need to bring yourself, we have 12 iMacs, fibre optic broadband, plenty of software, soldering irons, electronics bits and bobs, iTunes and Spotify. Those of you who want to bring your own laptops, equipment, pizza, you can do although we just need to be mindful of PAT testing electrical stuff.

How much will it cost?

Nowt, nothing, zero.

If you’re interested just turn up or if you want to chat before contact:

Carl 07595692120 @carlplant
Ben 07876757180 @ben_mcmanus

I’ve created a visualisation in gephi showing the categories in which the where takes place. I’ve used Gephi which shows clusters of areas where the council spend.

This is an experimental visualisation for a project I’m about to work on and I wanted to get re-aquainted with the tool.

The image below is only a screenshot, I’ve attached a PDF which is captures the whole network graph in detail which you can zoom in and explore.

SOT Spending visualisation PDF

I wanted to put a few words together to raise awareness of the value found in harnessing information in the form of data, you know the stuff in spreadsheets, databases, even in social networks. Every organisation will be producing data in some form, from spending, ticket offices data through to data on web visitors.

Recently I have been learning to write software programmes alongside various techniques for scraping data from many sources (excel files, websites, databases etc). On this point I highly recommend Paul Bradshaw’s ebook Scraping for Journalists.

My point here is that I’m not a journalist in any shape or form, I run a creative technology organisation called bITjAM that uses digital content including data in the day to day running of projects. We use data in many of our creative work, training programmes and community engagement project. We use data to gain insights, tell stories, create interaction, evaluate and present our work. For us we consider harnessing and using data an integral part of our work.

So I would say whether you’re an theatre manager, community worker, nurse, artists, baker or *circus entertainer, it may be worth thinking about making use of information in the form of data to do your job better and possibly smarter.

*I’d be really interested in seeing this!!

I thought it would be useful to share a few resources I use when working with data, so here’s a few lists that should be a good place to start.

Many of the better places to find tutorials and blogs on the subject matter are related to investigative process like journalism or research, I would suggest that if you’re interested in making better use of data to search for blogs on:

• Data visualisation (or visualization)
• Infographics
• Data scraping
• Data mining
• Statistics

Check out these specific blogs:

Check out these bookmarks on Delicious:

• Opendata
• Data + Visualisation
• Data scraping
• Data mining

Some of the programmes  I use are:

• Google docs
• Tableau
• Google Refine
• R project
• Scraperwiki
• Outwit Hub
• SOFA statistics

This post will be cross posted with the bitjam.org.uk site

I decided to do my bit and help to turn this data collected by the Stoke on Trent Foodbank into something useful for their website to help others see the help these resources are providing for families in need. I’ll hopefully be providing a realtime graph on the Trussell Trust’s SOT website showing how many people have been fed as well as a number of statistics.

I think this is quite an amazing story with many households in Stoke struggling themselves and yet go out of their way to give food to these banks to feed neighbours. There is local data (which I’ll build a graph later) showing the huge amount of food that’s been donated so far. Who says that community is dead?

Below are some early graphs which tell a story in their own right, I’ll spruce these up and train the foodbank staff to add data easily and add to their website in the New Year.

ps the data for October is not for the whole month hence the apparent drop off, this will be significantly higher continuing the increase when the team get to add data for November and December.

I used a data gathering service called Scraperwiki which takes the information from the planning application area of the site and allows developers and geeks to build their own web sites and maps.

I have set the data gathering Scraperwiki to get the data every day and hold it here. From this database we can create maps (many thanks to David Elks from This is Staffordshire for the map) as seen below.

I’ll also add a table of the same information so you can scroll through the information without depending on the Council’s website too often. I would advise while the map and table are available these depends on how the Council run their website, if they change things the information gathering part of this project breaks down, so always check the original source of information.

Access the data table via this link

A quick recap: The Department of Health collect data from many Acute Hospitals which include data related to the extra pressures felt by NHS hospitals during the winter months. These include Ambulance queues, closed beds and the affects of Norovirus.

This data needs to be used to both provide insight into the incredible amount of work required to keep the NHS going through winter while also reminding us that both care staff and the public play a part in keeping the service running effectively.

So, the hard work of Paul and Tony has led to this daily updated data becoming a little more usable for everyday folks. What I mean by usable is for the opportunity of building widgets, graphs and apps to give us insight into how our local Acute services are coping.

Ok here’s a little technical stuff but bare with me:

The data has been taken form the DH page and pulled into Scraperwiki (a bit like a database). From this database we can with a little knowledge pull this data into other programmes to make graphs, widgets etc.

So, I’ve had a little play with the sitrep data Scraperwiki API (API’s provide a way to pull and push data in and out of web stuff).

I’ve used Tony’s excellent datastore which breaks the data down into ID numbers, each ID refers to different areas such as numbers of beds closed to Norovirus or number of Ambulance queueing.  I’ve used the ‘Explore API’ link to get to a page that allows you to use SQL to request data. I’ve selected the data export as HTMLTable but you can use others such as json, CSV etc.

The example below uses data on beds closed due to Norovirus/D&V  from Q34 which is theWest Midlands region. I’ve pulled this data into Google Spreadsheets and used the =importHTML() function. Then I’ve created a timeline graph showing the numbers of Norovirus cases over time.

Here’s the SQL code:

select toDateStr,value,code,Name from `id_7`Where SHA=’Q34′ ORDER BY value desc

Here’s a graph I made from this data after it had been pulled into Google docs (and here’s the link to the Google docs table):

As yet this is still work in progress and subject to change. Have a play with the data, hopefully we can work in collaboration and make this data usable.

Again it’s down to the fantastic voluntary effort from both Paul, Tony and others doing stuff with open data. I really hope that more folks in the NHS can see the value of opening this data out and even find some way to support this type of work. There’s plenty of data powered services in the NHS which are not really up to much, more of this data needs to opened out for innovation

..ok rant over..

ps Tony also has a great example of a graph showing SHA overall Norovirus bed closures created from within Scraperwiki. I wanted to look for ways to do similar for mere beginners such as me.

pps Here’s a link to a very good web app (NHS Trust SitRep report) that Tony has built using the sitrep data.