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
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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 ..

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About Ian McNicoll (ehrhead)

Former Scottish GP turned Clinical modelling consultant. Mainly working on openEHR related projects with Ocean Informatics.
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9 Responses to What about ‘Fredbook’ ?

  1. Pingback: What about Fredbook? « ehrhead

  2. Algar Goredema-Braid says:

    I am in the LinkedIn Group that has been discussing Fred. I am excited to hear a seed has been planted and it is being nurtured. For Fred’s sake I hope we produce something that will make the difference we all wish to see. Good luck

  3. Rob Dyke says:

    Great write up – looking forward to finding out more at PHC conf.

    Might I suggest MyDex personal datastores and/or Unhosted data storage models?

    Looking forward to the hackday(s) too. Need any infrastructure?

    • Hi Rob,

      Thanks for these suggestions. It does raise the interesting and contentious topic of whether this is citizen or professionally-controlled health information, MyDex being a good candidate for the former.

      However, Fredbook was really envisaged as a professional tool to which the patient would have very free access, as it is crucial that the information is curated and managed to avoid the dangers of the Hawking Horizon. One interesting possibility might be that the raw feed is also mirrored to a personal MyDEx. Do you have any experience in this area or possible contacts?

      • Rob Dyke says:

        As Ewan writes : “much better that each user shares their primary record only with those within their Hawking Horizon and uses other methods to communicate beyond it.”

        MyDex might help with sharing beyond the Hawking Horizon, with information fed to the PDS from Fredbook, and made available as healthcare related contacts/events occur that the individual wishes to share. In turn, such authorisation could enable limited access to back to Fredbook, for submission of data for consideration of entry into the canonical record.

        I’m loosely connected to MyDex via my membership of ORG. I’ve asked for Tactix4 to become a partner for th eprototype phase as I’m interest in integrating such technologies in mobile healthcare applications. I’ll try and get a conversation started.

  4. This EHI interview is well worth a look as some aspects of the ‘Patients Know Best’ philosophy appears to be similar to that of Fredbook

    Interview on EHI TV with Dr Mohammad Al-Ubaydli CEO of Patients Know Best. Interesting PHR approach http://ow.ly/4NSAd

    Looks like a good candidate for a future PHINFO or other PHCSG event

    • Wow – good eyesight, Adrian!! Some of the XML schema diagram annotations indeed say ‘from Jazz’

      ‘Jazz’ was the collaborative Elderly care project we tried to get going – jazz was short for ‘joint assessment’ which morphed into ‘single shared assessment’.

  5. Is the Fred book concept still going?
    Would be interested to know more.

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