Opportunities for Personalisation in Health Informatics Mark Hawker Tuesday 28 th April, 2009

Who Am I? Graduated last year with a First-class Honours degree in Informatics (a mix of Computing, Business, Health etc.) Final Year Project on mashups between clinical and population data sets Work at the Yorkshire Centre for Health Informatics: Preparing and delivering learning and teaching resources for our MSc Health Informatics programme Working on a Wellcome Trust funded project on the effective use of clinical databases for research Networking with other universities, industry and the NHS. Member of the BCS, ASSIST, NHS UK Faculty of Health Informatics Contactable on Twitter – @markhawker – but also e-mail [email_address] .

Graduated last year with a First-class Honours degree in Informatics (a mix of Computing, Business, Health etc.)

Final Year Project on mashups between clinical and population data sets

Work at the Yorkshire Centre for Health Informatics:

Preparing and delivering learning and teaching resources for our MSc Health Informatics programme

Working on a Wellcome Trust funded project on the effective use of clinical databases for research

Networking with other universities, industry and the NHS.

Member of the BCS, ASSIST, NHS UK Faculty of Health Informatics

Contactable on Twitter – @markhawker – but also e-mail [email_address] .

Learning Objectives To introduce you to the Health Informatics world, and the current problem space To learn a bit about the NHS, and the changing nature of global healthcare delivery To explore where Personalisation and User-Adaptive Systems could support Health Informatics , and look to future developments in this area. Sorry to disappoint, but this lecture is not about technology! It is about needs, wants, and opportunities for exploiting the skills that you all have acquired at the University of Leeds . These skills are not being fully-utilised in health sectors, not just here, but worldwide.

To introduce you to the Health Informatics world, and the current problem space

To learn a bit about the NHS, and the changing nature of global healthcare delivery

To explore where Personalisation and User-Adaptive Systems could support Health Informatics , and look to future developments in this area.

Sorry to disappoint, but this lecture is not about technology! It is about needs, wants, and opportunities for exploiting the skills that you all have acquired at the University of Leeds . These skills are not being fully-utilised in health sectors, not just here, but worldwide.

Lecture Outline What is Informatics? What is Health Informatics? Introduction to the NHS, relevant policies, and global healthcare challenges: Aging populations Burden of chronic diseases Consumer Health Informatics: Digital Consumerism Issues and Opportunities MSc Health Informatics Summary

What is Informatics?

What is Health Informatics?

Introduction to the NHS, relevant policies, and global healthcare challenges:

Aging populations

Burden of chronic diseases

Consumer Health Informatics:

Digital Consumerism

Issues and Opportunities

MSc Health Informatics

Summary

Informatics Informatics includes the science of information , the practice of information processing , and the engineering of information systems Informatics studies the structure , behaviour , and interactions of natural and artificial systems that store , process and communicate information. Since computers, individuals and organisations all process information. Informatics has computational, cognitive and social aspects, including study of the social impact of information technologies .

Informatics includes the science of information , the practice of information processing , and the engineering of information systems

Informatics studies the structure , behaviour , and interactions of natural and artificial systems that store , process and communicate information.

Since computers, individuals and organisations all process information. Informatics has computational, cognitive and social aspects, including study of the social impact of information technologies .

Health Informatics “ Health Informatics is the knowledge , skills and tools , which enable information to be collected , managed , used and shared to support the delivery of healthcare and promote health.” NHS Connecting for Health, UK Health Informatics Society

“ Health Informatics is the knowledge , skills and tools , which enable information to be collected , managed , used and shared to support the delivery of healthcare and promote health.”

NHS Connecting for Health, UK Health Informatics Society

Health Informatics “ It’s mainly about people and processes, not technology. The hard stuff is the soft stuff.” Prof. Dennis Protti (2007)

“ It’s mainly about people and processes, not technology. The hard stuff is the soft stuff.”

Prof. Dennis Protti (2007)

The NHS

836,000 people consult their GP or Practice Nurse There are 50,000 visits to A&E There are 114,000 emergency admissions There are 19,000 calls to NHS Direct 73,000 adults receive NHS dental treatment 389,000 people receive care in the community 124,000 people attend outpatient clinics There are 44,000 elective (planned) admissions There are 7,000 visits to walk-in centres. Every Day In The NHS…

836,000 people consult their GP or Practice Nurse

There are 50,000 visits to A&E

There are 114,000 emergency admissions

There are 19,000 calls to NHS Direct

73,000 adults receive NHS dental treatment

389,000 people receive care in the community

124,000 people attend outpatient clinics

There are 44,000 elective (planned) admissions

There are 7,000 visits to walk-in centres.

NHS Policy Numerous policies exist, and have evolved, in the NHS. In particular, Our Health, Our Care, Our Say and High Quality Care For All: NHS Next Stage Review Increasing shift, and acceptance, towards patient-centric services and choice which give the public more control over their own health In Our Health, Our Care, Our Say four work-streams exist: Patients and service users are given a greater say and more choice over where and when they receive their NHS care. Choice won't mean anything unless there’s a wider range of high-quality , convenient and personalised services for patients to choose from . The money to pay for treatment follows each patient to the organisation they have chosen - so the best providers attract the most patients and the most money, while unresponsive or wasteful organisations are encouraged and supported to improve. This will all happen within a clear set of rules and standards so patients are guaranteed safe, fair and high-quality NHS care, wherever they choose to receive it.

Numerous policies exist, and have evolved, in the NHS. In particular, Our Health, Our Care, Our Say and High Quality Care For All: NHS Next Stage Review

Increasing shift, and acceptance, towards patient-centric services and choice which give the public more control over their own health

In Our Health, Our Care, Our Say four work-streams exist:

Patients and service users are given a greater say and more choice over where and when they receive their NHS care.

Choice won't mean anything unless there’s a wider range of high-quality , convenient and personalised services for patients to choose from .

The money to pay for treatment follows each patient to the organisation they have chosen - so the best providers attract the most patients and the most money, while unresponsive or wasteful organisations are encouraged and supported to improve.

This will all happen within a clear set of rules and standards so patients are guaranteed safe, fair and high-quality NHS care, wherever they choose to receive it.

United Health Problems All developed countries have the same problems, however they organise their health systems: Changing demographics Changing disease patterns Rising costs Patient choice But also, we are becoming increasingly digitally connected and our expectations of health care are increasing. From experience, this is a hugely under-explored area.

All developed countries have the same problems, however they organise their health systems:

Changing demographics

Changing disease patterns

Rising costs

Patient choice

But also, we are becoming increasingly digitally connected and our expectations of health care are increasing. From experience, this is a hugely under-explored area.

Aging Populations Western Populations are Aging

Health Informatics Paradigm Shifts

Chronic Disease/Long Term Conditions A chronic disease is one that “requires ongoing medical care, limits what one can do, and is likely to last longer than one year” Chronic conditions are “the health care challenge of this century” and are responsible for 60% of the global disease burden Includes not only diabetes, hypertension, dementia, obesity, depression, arthritis, and the like but also many cancers and AIDS In the UK: 60% adults (17.5M), 45% of which have multiple conditions 75% of over 75s Incidence in >65s will more than double by 2030 In the US patients with chronic disease account for 78% of health costs.

A chronic disease is one that “requires ongoing medical care, limits what one can do, and is likely to last longer than one year”

Chronic conditions are “the health care challenge of this century” and are responsible for 60% of the global disease burden

Includes not only diabetes, hypertension, dementia, obesity, depression, arthritis, and the like but also many cancers and AIDS

In the UK:

60% adults (17.5M), 45% of which have multiple conditions

75% of over 75s

Incidence in >65s will more than double by 2030

In the US patients with chronic disease account for 78% of health costs.

Chronic Disease Management

3/8757 Hours Patients with chronic conditions have access to healthcare professionals for only a few hours each year The rest of the time patients care for themselves.

Patients with chronic conditions have access to healthcare professionals for only a few hours each year

The rest of the time patients care for themselves.

Consumer Health Informatics Consumer Health Informatics should involve the following: analysing, formalizing, and modelling consumer preferences and information needs ; developing methods to integrate these into information management in health promotion , clinical , educational , and research activities ; investigating the effectiveness and efficiency of computerised information, (tele)communication, and network systems for consumers in relation to their participation in health- and health care-related activities; studying the effects of these systems on public health, the patient-professional relationship, and society . Ideally, all consumers should be able to access valid and relevant information about their health status: They should have the ability to judge the advantages and disadvantages of all possible courses of action According to their own beliefs, values, preferences and other circumstances they should be able to make informed choices about their care . Eysenbach and Jadad (2001) Evidence-based Patient Choice and Consumer health informatics in the Internet age. Journal of Medical Internet Research; 3(2): e19.

Consumer Health Informatics should involve the following:

analysing, formalizing, and modelling consumer preferences and information needs ;

developing methods to integrate these into information management in health promotion , clinical , educational , and research activities ;

investigating the effectiveness and efficiency of computerised information, (tele)communication, and network systems for consumers in relation to their participation in health- and health care-related activities;

studying the effects of these systems on public health, the patient-professional relationship, and society .

Ideally, all consumers should be able to access valid and relevant information about their health status:

They should have the ability to judge the advantages and disadvantages of all possible courses of action

According to their own beliefs, values, preferences and other circumstances they should be able to make informed choices about their care .

New Medical Informatics Eysenbach (2000) Consumer health informatics. BMJ; 320: 1713-6.

(New) Models Of Care Different models of the consumer-professional relationship: a) paternalistic, b) educational, c) Internet-age, and d) consumer-as-partner.

Complex Solution Space Eysenbach (2008) Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness . Journal of Medical Internet Research; 10(3): e22.

Web 2.0

Digital Devices

I Tweet Therefore I Am

Information Overload? From my 349 subscriptions , over the last 30 days I read 22,473 items , starred 88 items , shared 494 items , and emailed 0 items . How could a health professional, or patient, use this kind of information? Recommended reading Knowledge sharing Social filtering

From my 349 subscriptions , over the last 30 days I read 22,473 items , starred 88 items , shared 494 items , and emailed 0 items .

How could a health professional, or patient, use this kind of information?

Recommended reading

Knowledge sharing

Social filtering

Cyberchondria Key Harris Interactive (2007) and Pew Internet polls found: 80% of all adults who are online (i.e., 53% of all adults) sometimes use the Internet to look for health care information. However, only 18% say they do this “often”, while most do so “sometimes” (35%), or “hardly ever” (27%) This 80% of all those online amounts to 110 million cyberchondriacs nationwide. This compares with 54 million in 1998, 69 million in 1999 and 97 million last year On average those who ever look for health care information online do so three times every month A slender majority (53%) of those who look for health care information does so using a portal or search engine which allows them to search for the health information they want across many different websites. About a quarter (26%) go directly to a site that focuses only on health-related topics and one in eight (12%) goes first to a general site that focuses on many topics that may have a section on health issues.

Key Harris Interactive (2007) and Pew Internet polls found:

80% of all adults who are online (i.e., 53% of all adults) sometimes use the Internet to look for health care information. However, only 18% say they do this “often”, while most do so “sometimes” (35%), or “hardly ever” (27%)

This 80% of all those online amounts to 110 million cyberchondriacs nationwide. This compares with 54 million in 1998, 69 million in 1999 and 97 million last year

On average those who ever look for health care information online do so three times every month

A slender majority (53%) of those who look for health care information does so using a portal or search engine which allows them to search for the health information they want across many different websites. About a quarter (26%) go directly to a site that focuses only on health-related topics and one in eight (12%) goes first to a general site that focuses on many topics that may have a section on health issues.

Medicine and Health 2.0 Medicine 2.0 applications, services and tools are Web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies as well as semantic web and virtual reality tools, to enable and facilitate specifically social networking , participation , apomediation , collaboration , and openness within and between these user groups. Health 2.0 is the participatory healthcare characterised by the ability to rapidly share , classify and summarise individual health information with the goals of improving health care systems, experiences and outcomes via integration of patients and stakeholders.

Medicine 2.0 applications, services and tools are Web-based services for health care consumers, caregivers, patients, health professionals, and biomedical researchers, that use Web 2.0 technologies as well as semantic web and virtual reality tools, to enable and facilitate specifically social networking , participation , apomediation , collaboration , and openness within and between these user groups.

Health 2.0 is the participatory healthcare characterised by the ability to rapidly share , classify and summarise individual health information with the goals of improving health care systems, experiences and outcomes via integration of patients and stakeholders.

Opportunities Developing advanced approaches to knowledge representation Multi-sensory uses of information e.g. kiosks, video, audio… Promoting team work and collaboration Giving consumers control over their own information Electronic patient records Home monitoring Blood pressure monitors, pedometers etc. Personalised/tailored information Affective technologies?

Developing advanced approaches to knowledge representation

Multi-sensory uses of information e.g. kiosks, video, audio…

Promoting team work and collaboration

Giving consumers control over their own information

Electronic patient records

Home monitoring

Blood pressure monitors, pedometers etc.

Personalised/tailored information

Affective technologies?

Issues Barriers related to providers who favour “classical”, authoritarian, paternalistic, asymmetrical models of care Lack of easy-to-access sources of high-quality relevant information The problem of low health literacy Limited access to the Internet Unlimited access to poorly organised information Few mechanisms to control the quality of information The changing role of health professionals.

Barriers related to providers who favour “classical”, authoritarian, paternalistic, asymmetrical models of care

Lack of easy-to-access sources of high-quality relevant information

The problem of low health literacy

Limited access to the Internet

Unlimited access to poorly organised information

Few mechanisms to control the quality of information

The changing role of health professionals.

Google Flu Trends Each week, millions of users around the world search for online health information. As you might expect, there are more flu-related searches during flu season, more allergy-related searches during allergy season, and more sunburn-related searches during the summer. You can explore all of these phenomena using Google Trends . But can search query trends provide an accurate, reliable model of real-world phenomena?

Each week, millions of users around the world search for online health information. As you might expect, there are more flu-related searches during flu season, more allergy-related searches during allergy season, and more sunburn-related searches during the summer. You can explore all of these phenomena using Google Trends . But can search query trends provide an accurate, reliable model of real-world phenomena?

Hospital Social Network Penetration Source Data: http://ebennett.org/data/

Scottish Telemedicine Booth Two telemedicine booths containing videoconferencing and physiological monitoring equipment were constructed for display at the Royal Highland Show in Edinburgh One was equipped for patient use and one for the doctor A total of 238 members of the public used the booth for a tele-consultation with a doctor. Ninety-three percent completed questionnaires Of the 221 respondents, 75% saw the booth as an opportunity to access specialist advice; 84% felt that the booth would save them attending a hospital or clinic; 60% felt that it would improve the way they looked after their own health. Mair et al. (2008) Feasibility of a telemedicine 'booth' for supporting remote care in Scotland. Journal of Telemedicine and Telecare; 14: 127–129.

Two telemedicine booths containing videoconferencing and physiological monitoring equipment were constructed for display at the Royal Highland Show in Edinburgh

One was equipped for patient use and one for the doctor

A total of 238 members of the public used the booth for a tele-consultation with a doctor. Ninety-three percent completed questionnaires

Of the 221 respondents, 75% saw the booth as an opportunity to access specialist advice; 84% felt that the booth would save them attending a hospital or clinic; 60% felt that it would improve the way they looked after their own health.

Task You have been given the opportunity to showcase your knowledge of personalisation and user adaptive systems to the Director of Informatics at Leeds Teaching Hospitals. You should demonstrate how the principles you have learned could enhance Scotland’s telemedicine booths. In what ways could the booths be personalised? What problems could you foresee in your implementation? How will you overcome these problems? How do you plan on evaluating your solution?

You have been given the opportunity to showcase your knowledge of personalisation and user adaptive systems to the Director of Informatics at Leeds Teaching Hospitals. You should demonstrate how the principles you have learned could enhance Scotland’s telemedicine booths.

In what ways could the booths be personalised?

What problems could you foresee in your implementation?

How will you overcome these problems?

How do you plan on evaluating your solution?

MSc Health Informatics Why should you consider this course? Healthcare demand throughout the world is exceeding supply - the need for radical solutions has never been greater Globally, IT is providing innovative approaches and transforming healthcare. The NHS and leading multinationals are making unprecedented investments in technology These organisations recognise that there is a critical skill shortage. There is a high demand for technical and business graduates who have additional health informatics qualifications The MSc in Health Informatics at Leeds will help you develop the skills needed to make a difference. Full and part-time places are available to study for a Masters degree, or a postgraduate diploma or certificate. The individual modules are also available as one-week CPD courses without assessment.

Why should you consider this course?

Healthcare demand throughout the world is exceeding supply - the need for radical solutions has never been greater

Globally, IT is providing innovative approaches and transforming healthcare. The NHS and leading multinationals are making unprecedented investments in technology

These organisations recognise that there is a critical skill shortage. There is a high demand for technical and business graduates who have additional health informatics qualifications

The MSc in Health Informatics at Leeds will help you develop the skills needed to make a difference.

Full and part-time places are available to study for a Masters degree, or a postgraduate diploma or certificate. The individual modules are also available as one-week CPD courses without assessment.

Industrial Links

Summary, And Questions? In academe and industry (consumer) health informatics is a rapidly expanding field “ Cyberchondriacs” are using the Internet more and more amongst other traditional methods of finding information Digital divides are apparent, but are closing Still issues of quality and governance Technology advances increase number (and variety) of communication channels Need to systematise and codify consumers’ needs, values, and preferences; analyse how information is digested and is best presented to consumers; and, how these variables influence outcome measures In my opinion, there is huge potential for personalisation in modern health care delivery. Any questions ?

In academe and industry (consumer) health informatics is a rapidly expanding field

“ Cyberchondriacs” are using the Internet more and more amongst other traditional methods of finding information

Digital divides are apparent, but are closing

Still issues of quality and governance

Technology advances increase number (and variety) of communication channels

Need to systematise and codify consumers’ needs, values, and preferences; analyse how information is digested and is best presented to consumers; and, how these variables influence outcome measures

In my opinion, there is huge potential for personalisation in modern health care delivery.

Any questions ?

Leeds Institute of Health Sciences Faculty of Medicine and Health Charles Thackrah Building 101 Clarendon Road Leeds, United Kingdom LS2 9LJ Tel. +44 (0) 113 343 4961 www.ychi.leeds.ac.uk