Inforium opens the internet for shared decision making by providing patients tailored medical information packets. It collects reliable information from accredited sources and delivers it directly to patients, making it easier than searching online. The presenters describe how their hospital uses Inforium to support shared decision making by allowing doctors to select customized information for patients that is then delivered via email. Patients report finding Inforium easy to use and appreciate receiving tailored medical content to aid in treatment decisions. The presenters advocate expanding Inforium's model of curated online health information to other organizations.

1. Inforium® opens the internet
for shared decision making
2013 Planetree Annual Congress,
Montreal Octobre 7
Dr. M.L.Y.M. Oei, Dr. M. Vleming
MD, PhD, ENT-surgeons
Flevoziekenhuis, Almere, The Netherlands

2. Introduction

3. Contents
• Shared decision making (SDM): How can we help to choose?
• Reliable medical information in SDM: BetrouwbareBron.nl
(Reliabesource.nl)
• How do we get knowledge to our patiënts (and beat Dr. Google)?
• “How we do it” in the Flevo Hospital
• Conclusions and future developments

4. Shared decision making
• An approach where clinicians and patients share the best available
evidence when faced with the task of making decisions,
• and where patients are supported to consider options, to achieve
informed preferences
• Elwyn et al. 2012

5. How do we make choices?
• Determine your goal.
• Arrange and examine the options available to reach it.
• Determine the likelihood of each option meeting your goal.
• Choose the option with the highest likelihood of meeting it.

6. Shared decision making process
Information and knowledge
Doctor  Patiënt
Options and verbal
explanation
Support information
(Local
info,Betrouwbare Bron)
Inforium (paper, video,
decision aids)
Wishes and feelings
Patiënt   doctor
Verbal
Non-verbal:Reactions
and interpretation
Explanation
Process and Decide
Doctor and patient
Evaluatie the options
Shared decision
choice talk option talk decision talk
D
E
C
I
S
I
O
N

7. “RELIABLE SOURCE. NL”

8. Traditional internet method
Patiënt
Website
Organization 1
(doctor, reliable)
Content 1
Links to
organizations like
organization 3
Website 1
(commercial)
Content 2
No links
Links to other
organization
Website
Organization 3
(patiënt,reliable)
Content 3
Links to many
organizations
Website 2
(unknown)
Content 4
-Patient searching through engine
(usually Google)
-Get a selection based on popularity
instead of not reliability
-Not patiënt specific
-Sources not transparent
- often commercial
- often advertorials
-"Reliable Sources" not recognizable
-Small "Reliable Sources" difficult to
find because of small target audience
D
r
.
G
O
O
G
L
E

10. Doctors
governmentpatiënts
non-profit
Patiënt
BetrouwbareBron Method
• The Patient is the core for information search
• Source-accreditation rather than content-confirmation
• No new content, but bundling and transparency
• Commerce and unknown sources excluded

11. • “RELIABLE SOURCE.nl”
• Goals:
– To gather and bundle reliable patient information on the
internet
• Provide reliabel relevant information to patiënts
• Safe referral harbor voor doctors and health professionals
• Cross-sector and independent presentation
– Assumptions:
• Each Reliable Source is right (from their specific viewpoint)
• Every patient is unique (in disease and need for information)

12. What is a BetrouwbareBron (Reliablesource)?
• Nationwide
• Dutch language
• Non-commercial
• On diseases, symptoms, health care, education and prevention
• Information aimed at patients / consumers
• Approved by or part of accrediting health organization

13. Accreditation organizations
• Professional associations: KNMG (doctors, AMA), KNMP
(pharmacists), NMT (dentists)
• Governmental and government-linked: RIVM (CDC)
• Patient organizations: member NPCF of CG-raad patiënt
association
• Non-profit organizations
– Comprehensive criteria such as objectives, association, funding,
partners

14. BetrouwbareBron (Reliablesource) websites
• Collection of content striaght to the relevant subject page
• Different sources with the same subject are bundled
• Bundles manually selected by medical volunteers
• Example (click to view)

15. Betrouwbare Bron Base (database)
• Largest dutch database of non-profit public health information
• Since 2008
• 258 BetrouwbareBron organizations
• > 8000 relevant links
• Continuous medical maintenance
– > 30 medical volunteers
– BetrouwbareBron organizations (NPCF, ENT-surgeons, Child
and hospital foundation)

16. Betrouwbare Bron Base
• Available for patients
– Published on the internet www.BetrouwbareBron.nl
• Available for health professionals and institutions
– Integration in websites, portals
• Available for e-health applications
– For example “Inforium”

17. Start a movement (click to view)

18. How do we beat Dr. Google?

19. Why do people go to Dr. Google?
• Information in the doctors consult is:
– Too much
– Too fast
– Too difficult (words and content)
– Too little knowledge
– Too emotional
• Told only once!  Make information repeatable!

21. Doctor-patiënt communication
• 60 % of the information is forgotten instantly
• Of the remaining 40%,
– half the information is remembered incorrectly
Kessels, JOURNAL OF THE ROYAL SOCIETY OF MEDICINE Volume 96 May 2003

22. But we have a website...

23. PATIENTS DO NOT VISIT YOUR WEBSITE
• Most people use Google or Yahoo for health information
• To publish information on your website is not enough
• Portals are too user unfriendly (for doctors and patients)
• The solution has to be easier than Dr. Google

24. KISS (Keep It Simple, Stupid) US Navy 1960
• The KISS principle states that most systems work best if they are
kept simple rather than made complex; therefore simplicity should
be a key goal in design and unnecessary complexity should be
avoided.

25. User friendly
• Easier for doctors
– Doctors/departments can manage the information themselves
– Doctors can choose Inforiums tailored to the patient
• Easier for managing information
– Easier content creation
– Responsibility to the proper persons
• Communication department in charge of readability, look and feel
• Doctor responsible for medical content
• Easier for patients!

26. What does Inforium® do?
• Collects, makes and delivers tailored
content
– Local flyers and information
– Databases (eg BetrouwbareBron)
– Multimedia (video)
– Hyperlinks, questionnaires
• Straight to patiënt mailbox
– Privacy compliant (anonymous)
– No mail addresses stored

27. • Easier for patients than Google !
–Tailored information in their own mailbox
–Multisource, multimedia information
–Privacy respected and environment friendly
–Information can be shared easily
–Better information for shared decision making

28. What did you say?
• Video (click to view)

29. How we do it at the Flevo hospital!
• Shared Decision Making in the ENT department with Inforium
• In the doctor’s office (click to view)
• At the reception desk (click to view)
• Example doctor screen (click to view)

30. Patient experiences
• Subjective: enthusiasm
• Questionnaires:
– Do you like Inforium in mail? Yes
– Do you like the content? Yes
– Easy to use? Yes
– Would you like to receive Inforiums
more often?
YES, please

31. Results
100%:Yes
What kind of information do you appreciate the most?
Do you understand the information?
Nomination
client award
2012

32. Make our own Planetree presentation Inforium

33. www.inforium.info
Use this code: ENG-montreal
( Dutch live Inforium: www.inforium.nl Code: FZA-SDMMOD )

34. Conclusions en future developments
• In Shared decision making, is reliable information a key element
• Make it easy for the patiënt and yourself
• Getting information to the patient is crucial, not making it.
• Websites get beat by Dr. Google, Inforium® beats Dr. Google

35. Future developments
• Share our knowledge and resources !
– Patient organizations
– Professional associations
– Health institutions
– Health websites
• Connect our knowledge
– PHR Personal health records
– EHR Electronic health records
– Health portals