Fred and his dog: an update

I’ve spent a good deal of time on Fred’s problems – and the resulting powerpoint presentation is on the NYHDHIF 2011 conference [1]
My final conclusion is that there are a good many excellent initiatives to address many of Fred’s problems: I suspect Fred will still need his Fred book to keep on top of all of them and link them together!
However, I have not found an answer to the problem of multiple AQPs providing care for different pathways of care to the same patient, and I suspect the only safe answer is to have one organisation in charge – the model of Virtual Wards [2], the Whole System Demonstrators (WSD) and other Telecare/Telehealth models [3] or care managed by a Community Matron/GP consortium or the US Guided Care model [4].

The PHCSG has discussed the problems of multiple prescribers in different organisations frequently: If you’ve missed it, read Ewan’s blog [9].
One of the problems is that to be successful and comprehensive, it would require all organisations involved to use epresribing: it may be a long time in coming.
Would a partial medication repository help Fred – or would the fact that it was partial and possibly not used by one or more AQPs add to Fred’s very real risk from incompatible or contra-indicated medication?

Direct patient access to their GP record would help Fred to allow selected health care providers to access his GP record: I am not clear that this would solve the problem – and Fred might be understandably cautios about sharing his access with all of the organisations caring for him – especially AQPs who might or might not have the same duty/degree of confidentiality as the NHS (and many patients don’t trust even the NHS).
Look at the Haughton Thornley Medical Centre website for a patient centred discussion of the issues. [10]

Can anyone produce a model where care can be shared safely between multiple organisations caring for different conditions in a single patient – or suggest how relevant information can be shared between the different AQPs, who will probably have different IT record structures using different drug dictionaries and Coding (if any)?

One of the needs we identified was the need for communication between the informal carers: have a look at Rally Round Me [5]: it looks as though this might be the answer for Fred.

Then there are the patient controlled records (PMRs) – sites such as Patients Know Best [6] and Howareyou [7] (not to be confused with HowRU [8]) – but as all the information is entered by the patient, I cannot at present see how they fit in with Fred’s needs to have his formal and informal care providers communicate with each other as well as with him.

Still, the preliminary results of the WSD have been hailed as providing the ideal way to improve care of LTCs – I’m not clear whether the demonstrators included patients with multiple comorbidities – by Andrew Lansley no less: so we will be encouraged to implement telecare with all the attendant infrastructure.
Will this suit Fred?

I haven’t concentrated on digital access: it should be possible – or could be made possible – to use interactive TV – and/or PC accessibility including screen readers and voice control.
If there is the will to do so.

[1] http://www.nyhdif.org.uk/previous_conferences.htm
[2] http://en.wikipedia.org/wiki/Virtual_Wards
[3] http://www.kingsfund.org.uk/events/past_events_catch_up/supporting.html#tab_1
and http://www.telehealthsolutions.co.uk/products/home-pod/
[4] http://www.guidedcare.org/
[5] http://rallyroundme.com/welcome
[6] http://www.patientsknowbest.com/
[7] https://www.howareyou.com/
[8] http://www.abies.co.uk/howru
[9] https://woodcote.wordpress.com/2011/04/27/medication-repository-anyone/
[10] http://www.htmc.co.uk/getaccessnow/

Since I last posted, there has been a good deal of of discussion, both on the PHCSG list (Discuss) and Linkedin – and finally there is good news: NHS East of England https://www.nhs.info/ and Cambridge Healthcare http://www.cambridgehealthcare.org/ may have a solution similar to the Fredbook – at any rate for the problem of direct communication between Fred and others.
I still don’t see any provision for communication between the different health care professionals involved in Fred’s care – or any allowance for patients who can manage a TV remote but don’t see any need for a computer..
How inclusive inclusive?
Mind you, Fred might be hard to include: we can’t all be technically literate – or even literate!

Fredbook development activites

There is a ‘live’ (ish) Pinax based Fredbook prototype at fredbook.tactix4.net. Development code and discussions to take place in the eHealthopensource codeforge.

 

 

 

Etherpad

http://openetherpad.org/s2eOWUuaCy

Fredbook hackday – just a few days to go…

Just a few days to go till the Fredbook Hackday.

Woodcote are sponsoring breakfast, thanks Ewan; The Guardian Developer Network people are sponsoring lunch and Tactix4 are sponsoring beers at the end of the day.

Fredbook Hackday 11th June 2011

The Fredbook hackday, CLICSIG, code-sprint, social is ON for 11th June, with dinner on evening of 10th June.

If you are interested, there is a sign-up page at http://www.surveymonkey.com/s/PJRQNQ2

Frameworks.

I thought that we’d adhere to Pareto principles and use an existing social network framework, in this case Elgg, to get 80% of the functions so that we can focus our efforts on the day to working out the logics, roles, relationships, modules and functions that Fredbook needs. We can then download, modify or coded from scratch to get the remaining 20% balance.

I’ve installed Elgg http://fredbook.tactix4.net/elgg01/ Elgg is documented here http://elgg.org/features.php and in more detail http://docs.elgg.org/wiki/Getting_Started_With_Development

Silas as suggested we also consider Pinax http://pinaxproject.com/. It is Django-based and so is written in Python. I’ll create an instance of this too and circulate the URL.

I’m interested in hearing back from people as to the code-skills that they have, so that we can choose a framework that most people have a technical understanding of.

On the day…..
Let’s split into groups, each looking at a different aspect of Fredbook:
Roles and relationships between actors using Fredbook
Functions for events and notifications
erm…..

In terms of Kit and Caboodle….
We’ll have desks and internet bandwidth a few white boards and a board room with projection facilities. I plan to bring a server running a couple of virtual machines so that each group can have their own copy of Elgg to play with. Each will need to bring own laptop, iPads, whatever.

Lunch and refreshments.
The Guardian Data Network people are sponsoring lunch. They know hungry hackers don’t write good code. There are tea and coffee facilities in the kitchen too.

Location.
We are being hosted by DMC Healthcare.

DMC Healthcare, Nice Business Park, Sylvan Grove, London, SE15 1PD

http://www.dmchealthcare.co.uk Here is a Google Map

Travel.
Public transport. Lots of buses: Marylebone (453), Waterloo (172) and London Bridge (21…?).
Rail: Queens Road Peckham is walkable.
Parking. There are 8 parking places on site and some more on the service road.

Conference of to a Flying Start

Roz Foad PHCSG Chair opened the conference with the biggest audience for some years.

We will try and keep you informed of interesting material as it emerges.

You can see my minute to minute thoughts on Twitter WoodcoteEwan

Summary of responses to the Fred problem

This has been a fascinating discussion – but mostly, unfortunately, conducted on other lists and blogs – so as the Conference is very close, here is a brief summary of where we’re at – in my personal view – at the moment.

There is general agreement that the problem is real, but no agreement about the exact implications – let alone the best approach. This is hardly surprising: the problem involves not only IT but also clinical management: who is actually in charge of making sure Fred gets the best medical and social care, isn’t harmed inadvertently and remains empowered.

I think there is agreement that there is a role for a “Care Coordinator” who is unlikely to be the GP, but needs to be highly trained and able to deal with both medical and social aspects, such as a Community Matron: this role might be just supportive of Fred – especially if the Fred involved didn’t have quite so many problems…

There are various models for this approach including Virtual Wards, Guided Care and Healthy Circles – but I’m not sure how any of them would be suitable for the total management of Fred (you haven’t forgotten the dog, have you?)

Still, here are a batch of URLs which may be of interest: see you at the conference!

Patients Know Best (a UK company)

http://www.patientsknowbest.com/

IBM Smarter Solutions for Healthcare

http://www-935.ibm.com/services/us/gbs/industries/healthcare/?cm_re=masthead-_-solutions-_-ind-health

CSAM

http://www.csamhealth.com/csam-plexus.aspx

Guided Care

http://www.guidedcare.org/index.asp

Healthy Circles

www.healthycircles.com

CareFX

http://www.carefx.com/

Virtual Wards

http://www.croydon.nhs.uk/services/Pages/virtualwards.aspx

PCEHR

http://yourhealth.gov.au/internet/yourhealth/publishing.nsf/content/home

NHS Examples

http://www.natpact.info/cms/328.php

Excelicare

http://www.axsys.co.uk/index.htm

What about ‘Fredbook’ ?

Mary Hawking’s ’What about Fred (and his dog)?’ rang many bells. I recall a patient’s ‘emergency’ admission for heart failure being delayed for two days while our nursing team desperately tried to find a temporary home for his prize cockatoo.

The challenge of Fred also reminded me of our attempt in 2001 to set up a communications-driven portal for our local Elderly care multi-disciplinary team which eventually failed because of the lack of technical infrastructure and even simple secure communications ability, though one success was the development of a set of shared care components in the Scottish SCI-XML standards, including ‘Pets’!

I first heard Mary discuss ‘Fred’ at the recent BCS HC conference followed by interesting exchanges on Linked-in which pointed to existing approaches such as ‘Virtual Wards’ , though ITC support seems limited to the use of email.  Encouraged to explore ‘social media’ in preparation for a PHCSG workshop it seemed intriguing that Facebook, with its streamed Wall/News Feed conversation, built upon structured information, was exactly the sort of paradigm we had envisaged for our elderly care team project.

By coincidence, Vince Kuraitis, a respected US health informatician, posted a blog article entitled ’Can Facebook be your platform for Care Coordination’.   The unsurprising conclusion was that Facebook itself was not appropriate but that the paradigm might well have application in complex care coordination, for both the care team and the patient. There are indeed some commercial examples starting to use this approach such as ‘Healthy Circles’  and ‘Patients Know Best’ .

The PHCSG has been looking to make contacts within the mHealth and Patient Health Record communities and the idea arose of creating a ‘Fredbook’ project to experiment with these some of these ideas. I lashed up a quick dummy UI to get help the discussion:

It is surprising how many of the core Facebook elements might have equivalents in a care coordination ‘Fredbook’ application :

Fredbook	Facebook
Team communications feed with comments / annotations	News feed / wall
Care team contacts	Friends
‘Patients like me’ contacts	Friends
Patient diary – ALL scheduled appointments and reminders	Events
Clinical correspondence e.g. hospital letters	Messages
Lab results	Messages
Patient measurements/device feeds	Messages
Targeted local resource directory	Ads

The PHCSG plans to take ‘Fredbook’ discussions forwards at the Primary Health Info Conference in May 2011 and to set up a ‘Hackathon’ shortly afterwards, to see just how much can be brought together from ‘mashups’ of existing open source/ open standard projects e.g. the Aliss Project which seems a natural fit to deliver targeted local community resource ‘ads’.

‘Fredbook’ should be a great vehicle to bring together the emerging enthusiastic patient apps/ mHealth community together with experienced, (some might say hard-bitten and cynical) primary care informaticians.  Regardless of whether a real ‘Fredbook’ application actually emerges we will learn a great deal, should have a lot of fun in the process.

Oh … and Fred’s dog will definitely be looked after ..

What about Fred (and his dog)?

There is an emphasis in modern healthcare on keeping patients, especially those with long-term conditions (LTCs) out of hospital, and providing them with services closer to home and supplied by multiple providers.

This would seem to need a new approach to organisation of care and the information – including but not exclusively medical records – to make sure that care is indeed seamless and joined up.
Meet Fred, a 70 year old widower living alone with his dog. Fred has insulin-dependant diabetes, arthritis (can’t give his own insulin), COPD, a fairly recent left leg amputation – and is understandably depressed.

Fortunately, he also has friends who often take him to the pub on Saturday nights – with the consequence that he is a frequent visitor to A&E on Sunday morning. (you haven’t forgotten the dog, have you?)

The challenge is to devise the information set-up to allow the safe management of Fred’s numerous medical and social problems, prevent medical untoward events (what if rheumatology want him on NSAIs but he is already on an ACE inhibitor to protect his kidneys? who decides which is the most important?) – and make sure the dog is looked after when Fred isn’t there!
Oh, by the way, Fred wants to be involved as well..

I’m hoping that anyone interested in the problem will be at the conference and ready to continue the discussion: will anyone be there on Monday afternoon/evening? I’m there Monday evening and both days of the conference..