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Cure for Paarkinsons


andrew richardson

on 14 April 2010

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Transcript of Cure for Paarkinsons

cure for parkinsons Perceived Issues Bias Towards Older Generation Lack of consolidated information PD UK Forum Not Working Everything is five years away Support infrastructure not good enough
and not consistant PD Nurses Experince Base The Plan Who - A team of like minded individuals working towards a common goal

What: To surface, structure and make available consolidated data around parkinsons with a view to
1) Being able to find key trigger points which as yet may be unknown
2) To enable predictive analysis for patients who do not yet know they have a pre-disposition towards PD
3) To enable capture of structured and tacit information

To enable a website which overarches all that effectively pulls important information form patients to bring them to the forefront Why?
We want a cure
We want our children to be ok
We want to be effective and have a voice to make this urgent
Only we know whats this bldy disease is about and what it does
We need to question and challenge the people who have the intellectual capacity to make a difference now
We need to provide alternative and structured views How:
Lots of ideas Pathway Analysis: Capture all existing hospital patient history data for people with PD in one data model
Match common pathways to find any traits
Ideally put in place live feeds to keep it living and breathing
Pull data from websites like PeopleLikeMe to enhamce with drug information, patient expereince

Big Patient Survey
Capture key dates, expereinces thoughts ideas PDS Maturity Model

Assess maturity of Research
Knowledge Management
.... NHS24 style content knowledge capture
Content mgmt
apply taxonomy
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