This document outlines a model for citizens to become co-producers of their own health, especially regarding chronic diseases and prevention, enabled by information and communication technologies. It proposes a Personal Guidance System (PGS) that provides citizens with personalized data, information, knowledge, and decision support to navigate their health. The PGS would integrate inputs from various health providers and services. It conceptualizes an "eco-system" with three layers: a model library maintained by patient organizations, platforms for ICT services built by enterprises, and specified standards. The goal is evidence-based, context-aware decisions around modifiable risk factors and their connections to conditions to support long-term health navigation by informed citizens.

1. The Citizen as Co-producer of Health
Outline of the Service Model
and
The Information Model for Chronic
Diseases
Niels Boye
University of Aarhus, Denmark
and
The PREVE FP7-Support Action:
http://PREVE-ORG.eu

2. Setting the scene - some statements
Healthcare is produced in an organisational
setting – and the citizen is “a patient”
Healthcare is co-produced in a personal
setting – and the citizen is not a patient
Healthcare is for acute diseases and
conditions – co-production of health is for
prevention and chronic diseases
A healthy life trajectory is like a journey -
navigation is crucial.
Heath-navigation is based on shared decisions
of which pathways to follow

3. In travel
“If you don’t know where you are going,
any road will take you there”
Lewis Carroll,
Alice in Wonderland
In personal health
You learn were to go and many roads
may take you there

4. Conceptual aims
Information and patients as resources
Nature, Nuture, and collaboration with
institutionalized health care
Personalized management of prevention and
care of chronic diseases – in a citizen context
Multilevel ICT-modeling of health and disease
encapsulated in to personal devices –
Personal Guidance Systems (PGS)

5. The Citizen as Co-producer of Health –
enabled by Information and Communication Technology
Health Service Delivery
Citizen as proactive subject
Client Centred Approach
Patient Centred Medicine Citizen as co-Producer of Health
Disease prevention
Disease compensation
Model & (Disease cure)
Concepts
Assisted living
Maturity of ICT
User as Operator
Expert Systems User as User
Corporate Centred Contemporary Layman Systems
State of the Art Individual Centred
in ICT and Ambient Assisted Living
Empowerment
Citizen as object

6. The PGS Service-model
(diabetes as example)
General Super-
Practice market
Specialist- Restaurant
centre
Car
Pharmacy
Farm
Museum
Hospital
Home Sports centre Work

7. Data–Information–Knowledge-Decisions
Data is a simple value-set without context, than can be
stored and exchanged electronically - if there is
technical interoperability e.g. 130/95
Information is a simple message where the value-set
is provided a predefined context. Information can be
exchanged electronically if there is semantic interoperability
(e.g. blood pressure measured to the value of 130/95 mmHg)
Knowledge is information provided a dynamic personal and
organisational context and relations to other knowledge.
Knowledge can be utilized and exchanged using computer-
models and ontologies
(e.g. blood pressure of 130/95 is abnormal in Peter a 25 year old diabetic patient)
Decisions are made on the basis of knowledge

8. The Personal Guidance Systems Service-
model
(diabetes as example) Commodity service providers
Information
Health providers
Knowledge
Personal
device
Data
Exercise
Diabetic

9. The machine-room of the “Citizen as co-producer of health”
(the ECO-system building blocks)
Political, social, economic
Data
Information
Knowledge access
Co-producers Choice architectures
HealthGPS
(digital avatar)

10. Apoteket

11. Apoteket

12. Decision support - personal level
Fitness centre
Home
Physiotherapist
Hospital

13. Decision support – the societal level
Quality Assurance – Governance Information
Clinical
encounter
EHR
HMO/
Region HealthPGS
Quality (digital avatar)
Assurance
The citizen controlled and
shared information is taken in to
Healthcare
Hospital the QUALITY ASSURANCE LOOP
Co-production

14. Decision support – Research
Clinical
encounter
Research/
Pharmaceutical Co PGS
(digital avatar)
Patient-NGO
Hospital

15. Decision support – Research
Clinical
encounter
EHR
HMO/ Research/
Region Pharmaceutical Co Health-PGS
Quality (digital avatar)
Assurance
Healthcare Patient-NGO
Co-production Hospital
Research

16. The Health-co-production ECO-system
Three layer Business Model
“App store” - the model library
of health conditions
Build by community research and
innovation; maintained and certified
by Patient-NGO’s; NEW business
opportunity for especial SMEs
The platform(s) for ICT-services
Build and maintained by enterprise-
vendors. Specified and tested by EC
in a (major) CIP-like project
The “Communication and Semantics”
layer – specified by Standards

17. Decision support – in prevention
Contemporary service model (provider push)
of prevention:
•Non-specific lifestyle modifications
•Primary prevention (e.g. immunisations)
•Secondary prevention – (e.g. screening
programs)
•Tertiary prevention of complications to
disease

18. Decision support – in prevention
From the citizen point of view there is no distinction
between primary, secondary and tertiary prevention
- it is all evidence- and knowledge-driven behaviour
based in personal-context, ICT-augmented decisions

19. Evidence Based Associations between Risk Factors and Conditions
Diseases and Disorders Risk Factors
Type 2-diabetes Tobacco smoking
Preventable cancer Alcohol consumption
Cardiovascular disease Diet
Osteoporosis Physical activity
Musculoskeletal disorders Obesity
Hypersensitivity disorders Accidents
Mental disorders Working environment
Chronic obstructive pulmonary disease Environmental factors

20. Decision support – in prevention - Example
Evidence of food having impact in Cardio Vascular Disease
Reduction i CVD
CVD=Cardiovascular Disease,
disease risk (%) Reference CI = Confidence interval
(95% CI)
Wine 32 ( 23-41) Circulation 2002;105:2836-44
(150 ml/day)
Fish 14 (8-19) Am J Cardiol 2004;93:1119-23
(114 gr 4x/week)
Dark chocolate 21 (14-27) JAMA 2003;290:1029-30
(100g/day)
Fruit and vegetables 21 (14-27) Lancet 2002;359:1969-74
(400 g/day)
Garlic 25 (21-27) Arch Intern Med 2001;161:813-24
(2.7 g/day)
Almonds 13 (11-14) Circulation 2002;106:1327-32
(68 g/day) Am J Clin Nutr 2003;77:1379-84
Combined effect 76 (63-84)
Franco OH et al. BMJ 2004;329:1447-50.
A “polymeal” of the above would cost 21.60 Great British Pounds per week (2004)
and give an average increase in life expectancy of 6.6 years for men and 4.8 years for women
And give men 9.0 years more life without heart disease for women (8.1 years).

21. Co-production of Disease Prevention
Connections between Risk Factors and Conditions
Citizen Modifiable Risk Factors
Tobacco smoking Conditions
Type 2-diabetes
Alcohol consumption
Preventable cancer
Diet
Cardiovascular disease
Physical inactivity
Osteoporosis
Obesity
Non-Modifiable Risk Factors Musculoskeletal disorders
Accidents
Hypersensitivity disorders
Working environment
Mental disorders
Environmental factors
Chronic obstructive
pulmonary disease
Family history and gender

22. There is still some fences to
jump and some
conventional weapons to
drop before we can realise
the
“Citizen as co-producer of health and prevention”