Events

Patients Know Best

Mohammed Al-Ubaydli

Dr Mohammed Al-Ubaydli from Patients Know Best came to talk to the Cambridge Refresh group this evening. Patients Know Best is a startup which aims to help patients make use of their ‘Personal Health Record’ – a copy of which can be requested by anyone from their doctor under data protection laws.

The idea is that the management of a patient’s health should be a partnership between the patient and their doctor, and that anything the patient can do to help their doctor must be a good thing. People should take some kind of responsibility for their own illnesses.

One example Mohammed gave of this working is where a patient may spot something in their own record that their doctor has missed – after all, doctors are jolly busy people, and mistakes and oversights do happen. The patient isn’t doing the doctor’s job for them, just providing a second pair of eyes.

It turns out that there is a huge amount going on in both the UK and the US with patients using their access to their records to research their conditions and provide support to each other through social networks and other means. One of the jobs Patients Know Best is doing is collecting all this stuff together, onto a wiki. This is not only useful stuff to be doing, but also good marketing, of course. Patients Know Best could become synonymous with this kind of social use of medical records.

Patients Know Best are developing a software package to enable patients and doctors to communicate better through the web. My understanding is that it will allow patients to access their records electronically and then discuss the details with their doctor, without needing to make an appointment, thus saving everyone time. Mohammed is looking for people: to act as beta testers and to offer their services to the startup – principally Java-savvy developers at this stage.

You can see Mohammed’s slides on Google Docs.

Below are the notes I made during the talk – there may well be inaccuracies and falsehoods amongst the typos – if you spot any do let me know in the comments. I’ve tried to add as many links in as I can to help make the notes as comprehensible as possible…

  • Communication is crucial in chronic diseases
  • Patient has time to learn about your condition
  • Patient has less than 1 hour with specialist per year
  • Lots of different people work together with patients
  • Patient knows more than anyone about their personal circumstances
  • Why don’t more people use the web to communicate about their condition? 1. Security risks around digital data; 2. Issues around consent and data protection act; 3. What if the right person doesn’t get access to the information they need (eg doctors seeing patient records); 4. Not knowing that you can communicate, or how you can communicate
  • 3 key questions for your clinician: 1. What are we doing; 2. Why are we doing it; 3. What happens if we don’t do it?
  • Get a copy of your personal health record – you can’t know what is going on without it
  • Patientslikeme.com – takes the view that you are safer the more people know about your situation – also rareshare.org (treat such open sites with a little caution)
  • Patients’ access to PHRs is a Lutheran revolution – everyone should have access and understanding
  • Having understanding of your notes make medicine participatory not paternalistic
  • You can check your records and possibly spot something that busy doctors might miss (is this treating a symptom rather than the actual disease in the system?!?)
  • More private tools: MyFamilyHealth, healthecard, PAERS, t+medical, healthspace
  • Rareshare – social network for people with rare diseases. Sharing of experience and stories. Clinicians also use it to learn (US based)
  • Patientslikeme – connect with similarly ill people and share knowledge, experience etc. Learning from peers rather than those in ‘authority’ (US based?)
  • Harold Shipman – got away with it by faking records, not possible if publicly available. Elimination of distrust
  • PAERS – access records through web interface
  • Healthecard – carry your records around on a USB card, very private (UK)
  • Healthspace – you put your own info on it. Good system but isolated from NHS records.
  • Think positive (vodafone backed?) Records home monitor data (couldn’t find a link within 2 minutes so got bored)
  • MyFamilyHealth (Cambridge based) Plot family tree with illness history. GenSeq backed – they use DNA samples to provides details of health risks etc also. Provides tailored health information – which drugs would work best for you, etc?
  • 3G doctor – phone based. Video phone consultation for £35 after you have given them details of your problem/history etc. Phone back after 24 hours so have time to consider. (I find this worrying)
  • Lots of information about all these services at podcast.patientsknowbest.com also on the wiki
  • PatientsKnowBest is developing software to provide communications link between patient and doctor to help explain the patient record and what it means
  • How are ‘official’ NHS initiatives liaising with this stuff?
  • Obama to put medical records online?
  • Currently 3 electronic medical records system providers in UK, not many of which work properly
  • UK Gov has set data standards – should all match – HL7
  • Role of Google Health, Microsoft Health Vault etc – use CCR data standard (better?)  – also US based so data protection issues with EU etc
  • What about digital divide – those with access, time and money to do this stuff. Are people without the skills etc really going to get involved, will they be left behind? 2 tier health service?
  • Involvement of support groups, third sector, community groups etc
  • Issue of insurers and employers accessing details of medical history – possibly a concern
  • Mohammed is looking for beta testers and people interested in helping out with the project – UK & then US focused to begin with
  • Tolven Java based is the software for the medical record software
  • Starting with genetic immune deficiencies, then diabetes, asthma etc

Making Council meetings social

Council meeting room
Image credit: tricky

Tidying up a few bits on the IDeA Performance site, and seeing Steven Tuck’s comment on my previous post about it, I thought about how these techniques could be used in different situations within local government.

After all, here is a way of making a face to face event more accessible for people that can’t attend, and as a way of drawing together all manner of online resources for people to share and use.

How about using this kind of online social interaction in council meetings? I’m thinking it could probably be best applied to Overview and Scrutiny meetings, perhaps, but any kind of meeting where taking in views and submissions from people with an interest would work well.

What do people think? Could this work?

And does anyone out there fancy trying it out?!

IDeA Performance

This Friday (9th January 2009) the Improvement and Development Agency and LARCI are holding an event entitled Performance management plus: the next stage of performance management for operational improvement. Sounds like heavy stuff, but with a great mixture of speakers and workshop sessions I’m sure it will be a great day.

I have a little involvement with the event, though, because one of the people behind the event is IDeA’s own social media evangelist Ingrid Koehler, who fancied applying some of the ideas from my work in Sweden with Cisco to this event, and another one which is coming up at the end of the month.

IDeA Perfomance

To this end, we have created a site very much along the lines of the Cisco08 one (if it ain’t broke, right?) with a few modifications. There is going to be some blogging, bookmarking with delicious, flickr photos, video interviews and of course the Twitter backchannel – all aggregated on the front page. The tag to use in any content you would like to contribute is ideaperf – so tag away!

We really going to try to apply some of the principles described by David Wilcox in terms of creating a ‘social learning space’ – we want to make it possible for those not attending to play a part in what happens at these events – and for the conversations and shared learning to carry on afterwards for as long as is required.

So, anyone with an interest in local government performance management – do visit the site before, during and after Friday’s get together: share what you know, and find answers to your questions!

Barcamp on Ning

The upcoming Barcamp for UK government webby stuff now has a social network, thanks to Ning!

In many ways, this is a copycat …err… following good practice attempt after the excellent network set up by Tim Davies for the UK Youth Online event back in September. Having a more social environment for people to talk to each other before, during and after the event might help foster connections made and help get things done.

Of course, it isn’t to everyone’s taste and those that prefer email can stick with the Google Group and dedicated wiki-ers can use GovHack or the event wiki if they choose to.

I’m overcoming some of the issues I have had with Ning – a lot of the designs are now cleaner than earlier efforts, they are making a good fist (sorry) at getting rid of the ‘adult’ networks, and it’s easy to pull in content from elsewhere. Also, the simple act of paying a bit to get rid of the ads improves things.

So do swing by http://www.ukgovweb.org/ even if you can’t make it on the day to be a part of the conversations around this great event!

Cloudcamb notes

Cloudcamb

Here are the notes I mananged to make at CloudCamb, which was organised jolly well by Matt Wood (MZA on twitter).

Simone Brunozzi, Technical Evangelist, Amazon Web Services (simon on twitter)

Cloud computing helps answer the ‘prediction problem’ – knowing what your tech needs will be in the future

Need to expand to take advantage of an opportunity

What about periodical demand?

Results in extra cost and delays

lack of power and flexibility in infrastructure

Cloud computing allows a business to: focus on your skills, limit cap ex, scale quickly, reliable, innovate and save money

Principles of AWS: cloud computing, easy to use, secure, flexible, on demand, pay per use, self service, platform agnostic

Services: include S3 – storage, EC2 – virtual server, Cloudfront – content delivery, Database – SimpleDB

By end 2007 AWS were using more bandwidth than all Amazon retail sites put together. S3 objects (basically, files hosted) 800m in q3 2003, 29bn q3 2008

Cloud computing suits cloud computing. No upfront investment, cost effective, follow your success, shorter time to market

AMAZON S3 – Smugmug.com saved $500k pa using S3 (ie just by moving storage of files). Scalable online storage, cheap & reliable, simple APIs (REST, SOAP)

AMAZON EC2 – Vitual servers on demand, from $0.10 per hour, Linux, Windows, OpenSolaris all available. Elastic IP , Elastic Block store, availability zones, SLA 99.95% Licences for software can be paid for by the hour. Animoto Feb 08 80 ‘instances’ of EC2. Then launched facebook app went up to over 3500 by April. Would have been impossible to scale like that traditionally.

AMAZON CLOUDFRONT – Improve content delivery through caching. Easy setup, no committment, 8 locations in US, 4 in europe, 2 in Asia. Elastic and reliable. Tiered pricing.

AWS offers: fault tolerance, scalability, rapid innovation possible, no barriers of adoption, better pricing model, no upfront investment, faster time to market, choice, partners

Who uses? NY Times, Nasdaq, Washington Post, Linden Labs, amongst others

Future: operational excellent, security, certification for developers, international expansion, management console, load balance, auto-scaling, monitoring

EC2 now available in europe – though no Windows stuff

Amazon yet to not be able to provide service to a customer

Toby White – Inkling Software (tow21 on twitter)

Toby is talking about ‘Running a startup in the cloud’

All of Inkling’s servers run on EC2. But cost so far has been more than traditional servers, but that is not what matters. S3 is cheap, EC2 less so.

Ease of use – Inkling have few staff, have better things to do than server admin

Amazon makes process very easy, setting up new instances etc. Scriptable, repeatable and testable. Version controlling of AMIs. Forces you to consider these issues, which is a good thing.

Karim Chine – Computational e-Science in the Cloud: towards a federative and collaborative platform

Karim started by showing just how easy it is to use Amazon EC2. ElasticFox is an FF extension that helps manage the service.

There is a lot of science in this particular talk. I’m not sure I can keep up. It’s something about reproduceable computational results. I think. Just read this, if you want to know more.

Seriously, though, some of the stuff I understood about this show that the ability for people involved in scientific projects to collaborate over the internet in this way is superb, and the technology is clearly pretty innovative, not to mention hugely complicated. Given that I am attending a meeting in a building called the Centre for Mathematical Sciences, I would imagine that a lot of other people here would know a lot more about this than me.

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