Web 2.0, Health 2.0 and PHRs in England - so what?

Healthcare over Internet Protocol, Web 2.0, Health 2.0 and the Personal Health Record in England - so what?

Hypothesis

• The moment the NHS tries to grab web 2.0, it becomes web 1.0
• Web 2.0 is an insurgent state of mind
• insurgent
• individuals and groups exploiting technologies outside of central control
• radically extends the reach of the disruptive clinical innovator
• e.g. Neil Bacon allowing rating your own doctor
  
• state of mind
• Clip of Nigel Edwards, Director of Policy at NHS Confederation talking about the future of the NHS
• NHS Confederation does want the computer system, but not sure if best is national system or regional systems
• Controversy is care record system
• Thought would turn the corner, but now looks like central part really is not working
• Must avoid throwing more money at this just because we already spent money
• National is not best way to spend the money
• Honest and logical discussion - risk is "if, then, what now" situation
  
• Clip of Health 2.0 opening conference
• Health is... education, body, acitivists, information technology, us
  
• See CarePages.com, Sermo, Organized Wisdom
• No boundaries - not even national ones
• Clinician is no longer gateway to information - moderator rather than intermediary
• Individuals are defined by way they want to be, not by diagnosis assigned to them by the trust
• antibodies
• paranoid about "security" and "confidentiality" - but not thought about how users make risk / benefit decisions
• information is from authoritative sources only - "Darzi does partnership but on his terms only"
• but there are some influential minds
• Sir Muir Gray - same message for years now
• "The third revolution is different - everyone's involved and i's everywhere, it's adaptable, it's pervasive, it's inclusive and convergent... the third inustrial (and therefore, healthcare) revolution is driven by citizen, IT and knowledge. Professional are by and large two decades off the zeitgeist and this is not restricted to healthcare, it's sseen across all profession."
• hype or something else?
• Gartner's hype cycle is just beginning trough of disappointment
• further ahead in market insurance systems
• the health pyramid - assume that more people are at the base, but health journey through life
  
• multiple / complex conditions
• partly controlled single condition
• wellcontrolled condition
• prevention

HoIP opportunity model

• Professional care and interventions - face to face and remotely
  
• Information, advice, feedback tools, communities, social networks, resources
• Data analysis, interpretation and inference - the tools for inferring what pathways, risk, information and communities are most relevant to the individual at that point in time
  
• Data aggregation - the data that an individual chooses to 'expose' to different tools and analytics
• The personal record (longitudinal data about the individual): inferred data (socio/demographics), lifestyle data (what I bought at Tesco), health encounter records, monitoring device data, storage in one of many locations

The England PHR - a misnomer

• Personal health care encounter record - a detailed, longitudinal record of the outcomes of encounters with healthcare professionals and healthcare institutions. This will comprise largely clinically coded information etc
• Vs Personal Health Record - a record comprising the PHER and a much wider range of personal health, social, demographic, financial, economic, famly and social-network based data, information and knowledge resources.

HealthSpace is not a PHR (yet)....

• What is HealthSpace is going to be?
• Google Health and MS HealthVault are coming
• Will HealthSpace provide environment on which can plug in extra services?
• Classic example of NHS making web 2.0 becoming web 1.0

What is a health 2.0 record?

Questions

• How many patients really want access to the detail in this record?
• Only clinicians can understand the record
• A lot of the fears about confidentiality and security are actually diversions - do they really want to acces everything?

Secure added-value trusted data provided level - accessible to clinicians when authorised by patient. Elements accessible to trusted providers and carers by as authorised by patient

• How is the patient or carer really expected to make any form of sense of all this data?

Wider layer providing contributory, contextual information for value-added health and well-being services

• Tesco ClubCard?
• Access by the family carer
• Genetic information
  

Google and Microsoft are just providing framework for what HoIP mean by the real health 2.0 record

AI-driven analysis and contextual search and synthesis powering all three layers to provide support to clinician, patient and authorised cares. APIs powered a range of value-added applications. Moving to Health 3.0.

Connecting for Health does NOT work - need seed funding with the right incentive for bright individuals rather than centrally specified solutions.

Key issues in web 2.0

• how to connect people to information
• how to connect clinicians to information
• how to connect information to people and clinicians

Other interesting issues

• the need to develop new models of commissioning and delivering research that can keep pace
• Patient / user perceptions of risk and benefit
• Wisdom of crowds - peer advice and support and user-led innovation
• The impact of web 2.0 on the reach of the disruptive clinical innovator
• The new roles of clinicians in this environment
• Accreditation models - 'Trusted' partners, and expert patients are actually quite good at moderating content
• Self-regulation in social networking and peer environments
• Public health - predictive markets and surveillance
• Medical research and the PHR
• Creating the conditions for innovation - you can't legislate for it, you have to create the environment for it to flourish
• The use of AI to make sense of it all

Health 2.0 - thriving on the edge of chaos

?? mechanisms (get nice diagram)

1. Close to certainty and close to agreement - technically rational decision making and monitoring form of control
2. political decision making & control; compromise, negotiation, dominant coalitions
3. judgemental decisionmaking & idelogical control; logical incrementation
4. Disintegration & anarchy OR massive avoidance
5. The edge of chaos is where web 2.0 thrives

Daddy - where did all the money go?

Where did the money go? Possible hypotheses

• Someone stole it
• Lost it down the sofa
• Most scary - we have all been living on the edge of a soap bubble, and at some point, it is going to burst

Challenge for NHS is to realise that this is a moment of opportunity
Risk is what happens when we realise that the money has run out - when tax payer's money runs out, and so we go back to what we know, instead of going to what is new, as what always takes out of recessions