Healthcare over Internet Protocol  2009 HoIP CIC Health without boundaries Web 2.0, Health 2.0 and the Personal Health Record in England - so what? Mark Outhwaite Director HOIP Community Interest Company This presentation includes links to internet content on the BBC site and YouTube

Health 2.0 – something to wake up to..

Health 2.0 – a state of mind Antibodies Opportunities Risk averse Users decide if risks are worth the benefit Information from ‘authoritative’ sources only Fast deployment Privacy and security paramount Rapid lifecycles – perpetual beta Distrust of non professional data Small scale but extended reach Different time space continuum Not constrained by organisational boundaries Partnership but on professional’s terms Supports multiple lateral connections Do not trust user User self-segments to multiple peer groups Data mind set is ‘control’ at all costs Rapid adoption and spread Slow adoption and spread Open standards promote innovation Evidence must be peer reviewed User defined by their condition or illness Extends reach of the disruptive innovator Self-regulating Clinician as expert peer or moderator Wisdom of crowds brought to wicked issues Centrally controlled Centrally enabled but user-driven

But there are some influential minds The third revolution is different - everyone’s involved and it’s everywhere, it’s adaptable, it’s pervasive, it’s inclusive and convergent.............. The third industrial (and therefore, healthcare) revolution is driven by citizens, IT and knowledge. Professionals are by and large two decades off the zeitgeist and this is not restricted to healthcare, it’s seen across all professions. In the past we’ve given knowledge to clinicians who’ve then passed it on to patients, now our principles are that we give knowledge to patients and give them the opportunity to discuss it with clinicians. What is the best structure for financing and organising healthcare in 21C? - it doesn’t matter - you just have to decide how much to spend, how to allocate it and maximise use of resources. We should be thinking systems rather than structures, recognising the network that runs alongside every bureaucracy is responsible for innovation’. Sir Muir Gray – Chief Knowledge Officer

The third revolution is different - everyone’s involved and it’s everywhere, it’s adaptable, it’s pervasive, it’s inclusive and convergent.............. The third industrial (and therefore, healthcare) revolution is driven by citizens, IT and knowledge. Professionals are by and large two decades off the zeitgeist and this is not restricted to healthcare, it’s seen across all professions.

In the past we’ve given knowledge to clinicians who’ve then passed it on to patients, now our principles are that we give knowledge to patients and give them the opportunity to discuss it with clinicians. What is the best structure for financing and organising healthcare in 21C? - it doesn’t matter - you just have to decide how much to spend, how to allocate it and maximise use of resources. We should be thinking systems rather than structures, recognising the network that runs alongside every bureaucracy is responsible for innovation’.

Sir Muir Gray – Chief Knowledge Officer

Health 2.0 – hype or something else?

The health ‘pyramid’ Well controlled condition Partly controlled single condition Multiple/ Complex conditions Healthy Population The individual through their lifetime is likely to have a journey that passes through each or some of these zones. Throughout this journey a wealth of information and data is available about the individual. Increasingly individuals will be able access and store the data about themselves in one place and choose how they wish to share it. The opportunity is to provide high-value added services that whilst respecting privacy and confidentiality provide significant health and lifestyle benefits – delaying the transit through the pyramid.  2007 HoIP CIC The health journey through life Prevention

HoIP opportunity model Individual health journey Throughout the life of an individual there will be a range of factors that influence health and impact lifestyle. Increasingly individuals have an expectation that health issues do not constrain lifestyle even though lifestyle choices can impact health.  2007 HoIP CIC

HoIP opportunity model Individual health journey 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 or many locations. Increasing amounts of personal data are held digitally providing a longitudinal data trail describing lifestyle and health. Encounter records with health services, data provided from monitoring devices, lifestyle data such as purchasing patterns of consumables and foods and socio demographic data.  2007 HoIP CIC HOIP Opportunity : Generating awareness, market research, consumer engagement Key Core HoIP activity areas HoIP tools will influence pace

HoIP opportunity model Individual health journey Data aggregation/exposure - 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 or many locations. HOIP Opportunity : Scoring mechanisms indicating predictive power of shared information Personal data is held in many different locations – individuals will be able to choose from a range of technologies to aggregate this data physically or virtually (ie agents that monitor online food shopping). Individuals will be able to choose which data to expose/share. Data can be exposed for analysis and feedback to the individual. Individuals can also share pseudonymised data to improve the predictive power of the tools and may be rewarded for contributing in this way.  2007 HoIP CIC Key Core HoIP activity areas HoIP tools will influence pace

HoIP opportunity model Individual health journey Data aggregation/exposure - 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 or many locations. 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 HOIP Opportunity : Analytical engines; exposure and sharing protocols A core component for delivering a value-added service for individuals will be the ‘engine’ that analyses the shared data and then compares it with the individual’s exposed data to provide predictive analytics.  2007 HoIP CIC Key Core HoIP activity areas HoIP tools will influence pace

HoIP opportunity model Individual health journey Data aggregation/exposure - 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 or many locations. 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 HOIP Opportunity : Web 3.0 services, open standards for plug-ins to analytical engine to support community generated solutions. The latest research and practice in social networking supported by Web 3.0 technologies. Emphasis on user led community generation, peer support networks, expert clinical moderation. Information, advice, feedback tools, communities, social networks, resources  2007 HoIP CIC Key Core HoIP activity areas HoIP tools will influence pace

HoIP opportunity model Individual health journey Data aggregation/exposure - 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 or many locations. 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 Information, advice, feedback tools, communities, social networks, resources HOIP Opportunity : Health without boundaries – expertise location, clinical expert moderation of communities, diagnostic and treatment inference engines Clinical and care professionals are able to access exposed data as part of their diagnostic, treatment and care roles and use tools to support diagnosis, treatment and monitoring. Also shared data provides opportunities for research and disease surveillance. Professional care and interventions – face to face and remotely (clinical etc)  2007 HoIP CIC Key Core HoIP activity areas HoIP tools will influence pace

The England PHR – a misnomer The Personal Healthcare Encounter Record (PHER) – a detailed longitudinal record of the outcomes of encounters with healthcare professionals and healthcare institutions. This will comprise largely clinically coded information (and by coding we mean both technical coding such as SNOMED, READ, ICD and OPCS and the jargon based code of clinical language and terminology including the recorded observations and comments of the clinicians in contact with the patient). The Personal Health Record (PHR) – a record comprising the Personal Healthcare Encounter Record and a much wider range of personal health, social, demographic, financial, economic, family and social-network based data, information and knowledge resources.

The Personal Healthcare Encounter Record (PHER) – a detailed longitudinal record of the outcomes of encounters with healthcare professionals and healthcare institutions. This will comprise largely clinically coded information (and by coding we mean both technical coding such as SNOMED, READ, ICD and OPCS and the jargon based code of clinical language and terminology including the recorded observations and comments of the clinicians in contact with the patient).

The Personal Health Record (PHR) – a record comprising the Personal Healthcare Encounter Record and a much wider range of personal health, social, demographic, financial, economic, family and social-network based data, information and knowledge resources.

HealthSpace is not a PHR (yet)…..

What is a Health 2.0 health record? How many patients really want access to the detail in this record? Highly secure clinical encounter record derived from EPR/SCR – not modifiable (but annotatable) by patient and viewable only by authorised clinician and patient

What is a Health 2.0 health record? How is the patient or carer really expected to make any form of sense of all this data? Secure added-value trusted data provider level – accessible to clinicians when authorised by patient. Elements accessible to trusted providers and carers as authorised by patient

What is a Health 2.0 health record? Wider layer providing contributory, contextual information for value-added health and well-being services. Even more messy and complicated. How do we see the wood from the trees?

What is a Health 2.0 health record? AI driven analysis and contextual search and synthesis powering all three layers to provide support to clinician, patient and authorised carers. APIs power a range of value added applications. Moving to Health 3.0 © HOIP CIC 2008

Of course it does not need to be monolithic

So what do we think are the ‘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 Self-regulation in social networking and peer environments Public health - predictive markets and surveillance Medical research and the PHR Creating the conditions for innovation The use of AI to make sense of it all

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

Self-regulation in social networking and peer environments

Public health - predictive markets and surveillance

Medical research and the PHR

Creating the conditions for innovation

The use of AI to make sense of it all

Health 2.0 – thriving on the edge of chaos Ralph Stacey – Stacey Matrix The zone where Web 2.0 and Health 2.0 thrives

Daddy – where did all the money go to?

Where did the money go?

Where did the money go?

Where did the money go? Sharp transition into edge of chaos - the opportunity for Health 2.0 and web 2.0

Where the money really went?

Perils of web 2.0