We make health decisions everyday. We get our information from the Internet. As a society we are investing large amounts of funding for the health information systems. In this presentation, I tried to look from the perspective of a citizen and tried bringing a different perspective.

1. Health, Health Care and Health
Information Systems
A Citizen’s Pitch to Information
Technology Decision Makers
Erdem Yazganoglu, MD, MA, MHSc
2010
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2. What am I going to talk about?
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Establishing Ground Rules
How did we come where we are?
Where are we now?
What does future look like?
The objective of this presentation is to create discussion; the
ideas are purposefully exaggerated. Use of first person is
intentional to increase the drama.
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3. Establishing Ground Rules
1.
The objective of the health care system is to improve my health
and provide me with a comfortable death.
2.
The objective of every information system is to support decisions.
3.
The objective of health information systems is to support health
care decisions.
4.
In health care delivery, every activity I spend money on can be
considered a health care intervention and health information
systems are also health interventions.
5.
Any activity that does not have sufficient cost-benefit to me and
my community should not be maintained.
6.
Any record that health care system has about me is mine, I
should be able to decide what to do with it.
7.
Only I can make a change in my life for better health, nobody else
can. So my health decisions are the most important one for me.
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4. Historical Development of Canadian Health
Care Sector
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Hospital Insurance
Medically necessary services only
Expand to include pharmaceuticals and some home care
Can still be considered as “Sickness Care”
Engrained professional hierarchy, I am (the citizen/patient) the
lowest level in the hierarchy.
Historically, there was a great gap in medical knowledge between
professionals and patients.
Knowledge gap between patient and professionals created a
paternalistic relationship.
However, I am living in a country that has one of the highest literacy
levels in the world and I am now very well informed.
Paternalistic relationship has been dying everywhere in the society
and I want the same relationship with my health care providers.
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5. Historical Development of Health
Information Systems
• Information system development follows the same route,
starts from the hospitals – patient registration, operating room
systems, scheduling systems, radiology systems, laboratory
systems, order entry systems, clinical decision support
system, etc.
• Health care professionals’ information needs are the primary
concern.
• Objective is to integrate sickness data to support decisions of
the health care providers for better health care for patients
• Billions of dollars are committed and spent.
• Expectations are cost effectiveness through higher quality of
care and reduced adverse events for patients and increased
productivity and efficiency for health system – still requires
evidence.
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6. If hospital systems
are successful, what
percentage of
population benefit
from it?
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Source: BC Ministry of Health, 2009

7. If hospital systems are successful, how
many of the 24,000 lives can be saved and
for how long?
Baker et al. (2004) The Canadian Adverse Events Study: the incidence
of adverse events among hospital patients in Canada, Canadian Medical Association Journal, May 25, 2004; 170 (11), pp:1678-1686
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8. Health is a combination of a
multitude of factors
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9. Who makes the decisions?
Adapted from: Eby and Kilo, IHI National Forum, Dec 2006
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10. When we decide, where do we get our information?
• The primary source for
information is Internet, not
health care providers –
significantly age dependent
• Adults aged 18 to 34 were
more than 10 times as likely,
and adults 35 to 64 years
were more than 5 times as
likely to say they trust
information in the internet
than 65 years and older
group.
Hesse et al. (2005) Trust and Sources of Health Information - The Impact of the Internet and Its Implications for Health Care Providers: Findings 10 the
From
First Health Information National Trends Survey, Archives of Internal Medicine, No.165, pp:2618-2624

11. Has the source of information changed?
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Patients still highly trust their physicians but using them less and less as
an information source.
Internet, although not trusted, still the primary source for cancer
information and shows further increases from 2005 to 2008.
If this is for cancer, what about other conditions?
Hesse B, Moser, R. (2010) Survey of Physicians and Electronic Health Information New England Journal of Medicine, Vol
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362 No 9, pp 860, March 4, 2010

12. Gap between Providers and
Patients
• A lack of interactive communication technologies
available in the Internet
• A lack of health care professional production of
the information on the Internet
• A lack of interaction between these
professionals and patients on the Internet.
Lupianez-Villanueva, F (2009) Opportunities and Challenges of Web 2.0 within the health care systems:
An empirical explanation, Informatics for Health and Social Care, September 2009, 34(3): 117-126 12

13. Gap between cultures driving initiatives
Culture of Web 1.0
Culture of Health Services?
Culture of Health Information
Technology Implementation?
Hierarchy
Professional
Impersonal
Audience
Authoritative
Laws
Planned
Provider generated content
Regulated and Monitored
Large number of customers for few employees
Formal
Top-Down
Vertical
Command and Control
Managers/Professionals Rule
Sequential
Clear and Protected boundaries
Business to Business (B2B)
Culture of Web 2.0
Culture of Health 2.0?
Participation
Amateur
Personal
Community
Egalitarian
Rules
Trial and Error
Consumer generated content
Unregulated and unmonitored
Huge number of customers for few employees
Informal
Bottom Up
Horizontal
Adapt and Evolve
No one (or customers) rule
Self-organizing
Porous and Amorphous boundaries
Peer to Peer (P2P)
Adapted from: Stan Davies (2008) Health Care Leaders Association Conference, Vancouver, BC
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14. What are barriers?
Overt and Known: Maintaining patient privacy and confidentiality
Covert and Unknown: Changing roles and unease with this
Kim J and Kim S (2009) Physician’s perceptions of the effects of Internet health information on the doctor – patient
relationship, Informatics for Health and Social Care, Vol:34, No.3, September 2009, pages 136 - 148
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15. What about the information
Patient’s got from the Internet?
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They check the quality of the information and don’t discuss ones
that they believe does not have high quality
They use it only for their own purpose
They don’t discuss it if they don’t have a physician or the time of
consultation is too short
They don’t want to challenge the position of the health care provider
being the sole voice of medical expertise in a consultation
They don’t want to be embarrassed, laughed at, seen negatively or
seen as overly concerned.
They have seen providers who are not listening, being dismissive,
uninterested, or not open to the information due to its source.
In order to save face, they sometimes present the information
without telling that it is from the Internet.
Imes, R. S. et al. (2008) Patients’ Reasons for Refraining from Discussing Internet Health Information with their
Healthcare Providers, Health Communication, 23:6, 538-47
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16. Reframing
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The objective of health information systems should be to support all health
decisions, not only health care decisions.
The decisions that needs to be supported are patients and/or citizen’s
health decisions because they affect many, made more often, and has long
term consequences.
The elephant in the room is the patient and citizen, similar to other aspects
in health care we always fight for the patient without knowing what they
actually want and think.
Health information and support for health decisions should be carried as
close as possible to the patient.
Integration of health record will/should occur through Personal Health
Record (PHR), because fundamentally patient is the only stakeholder of that
record and also the only person with vested interest.
Currently, health care sector is not ready to embrace social media and the
information gap between the society and health care system will continue to
increase. In order for heath services to provide more benefit, they need to
find a way to be in patient/citizen’s social network.
If EMR is going to be implemented, the one of the first modules to be
implemented must be the patient portal. An EMR that doesn’t have a patient
portal is excluding the most important stakeholder of that system.
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17. Rhetorical Questions
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Your primary care physician came and asked you to
contribute money to his EMR’s purchase and
maintenance, how much would you be willing to pay?
A PHR provider came to you and asked money to
provide your medical record under your finger tips,
how much would you be willing to pay?
Do you know any EMR implementation project that
used Social Media? Does your EMR selection process
has any Web 2.0 requirements?
Do you have an EMR (EHR) 2.0? I really want to hear
about it.
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18. Summary Points
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Individuals make the majority of health decisions without the help of health
care professionals.
Timely and valuable information should be available, if health care system
serious about keeping them healthy.
Health care providers tends to be weary about the information individuals
get from the Internet but health care providers are not easily reachable
through web 2.0 tools
Information system investments are directed to improve hospital systems
where few in population with complex conditions benefit through health care
providers.
Information system technologies are not developed to link health care
providers with the patients.
Information system projects should be viewed as any other health care
intervention and should not be funded unless there is demonstrable net
health benefit.
There is a culture gap between what health care providers are used to and
comfortable with and what patients are doing and expecting.
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