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The Social MEDia Course: E-patients

The world of empowered patients
by

Bertalan Mesko, MD

on 3 October 2015

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Transcript of The Social MEDia Course: E-patients

The World of
E-Patients
Bertalan Mesko, MD, PhD
Medical Futurist
medicalfuturist.com
Brought to you by
Take home messages
Doctors should be able to "prescribe information" for patients.
Medical professionals must meet the expectations of
e-patients.
Learn how to transform a Googler patient to become an e-patient who is an equal partner in the treatment with better compliance.
E-patients represent the new generation of patients. Embrace and help them to achieve a better healthcare!
Thank you for the attention!
Send suggestions
Take the test
See other courses
info@webicina.com
Before going into details about who e-patients are and what kind of healthcare they need, let's see
an ordinary doctor visit in the future
Patient communicates regularly with the doctor via webcam
Actually they can do that now on the island of Hawaii if they are members of the healthcare system.
Uses mobile apps for tracking health, getting news, etc.
Accessing medical records online
Genomic data on a secure USB drive
Checking drug interactions and side effects
Uses RSS feed to be up-to-date
And at the end of the day, he/she writes a post on a blog...
What is a good patient like?

Have a list of questions

Want to know how they can take part in the treatment

Want to access their medical records online

Want a second opinion

Use the internet, smartphones, etc.
Basically, there are 3 types of patients
The Powerful Other
They believe the doctor alone is in charge of their health.
External controller
They do not believe they have any control over their health. What will be will be. They are fatalists.
Internal controller
They frustrate their doctors and they are also frustrated.
Here we have to make a difference between two other types
Googler
Brainsucker
Google Patient
These patients are frustrated, they frustrate the doctors and come with Google search results saying

"I found this on the web, I have this disease and need this drug."
E-patients are different!
E-patients are...
equipped
enabled
empowered
engaged
equal
expert
The real problem
The incidence of brain tumor is cc. 1:50,000
While the chance to find brain cancer related information after searching for headache is
much higher
!
These patients have different habits
„57 percent of consumers said that a hospital's social media connections would strongly affect their decision to receive treatment at that facility”
7
stories
from
E-patients
Maartensjourney.com
Friends scheduled visits via Google Calendar
Maarten is the co-founder of the augmented reality application, Layar
He went to the doctor because of some symptoms
They found a mass in his chest (mediastinum)
He started a blog to cover everything happening to him in order to get feedback
Shared pictures from his 1st chemotherapy
Published a video when a friend cut his hair
Got feedback from fellow patients and made a decision with his oncologist, and then:
Matt recommded Maarten to contact Dr. Einhorn because he is a specialist in mediastinal cancers.
Dad Delivers Baby With Help From Google
"Unsure of what do when his wife, Emma Smith, began having contractions at their home, and fearing that the midwife wouldn't arrive in time, the dad-to-be grabbed his Blackberry and
Googled "how to deliver a baby.
"

Leroy followed the step-by-step instructions he found on wikiHow, and successfully delivered his and his wife's baby girl, Mahalia Merita Angela Smith.
Getting help from Twitter
Living with Multiple Sclerosis
Youtube channel
Kerri Morrone Sparling
Diabetic blogger (sixuntilme.com)
A leading voice in the global diabetes community
A Perfect Match – A Social Media Love Story
E-patient Dave deBronkart
Cancer survivor and speaker
What do e-patients use online?
One specific example
(Fitness)
Fitbit device
Video channels
Specific search engine
Mobile apps
Slideshows
Fitness wiki
Podcast
Twitter channel
Blogs
Find curated lists of social media channels and resources focusing on medical onditions on Webicina.com!
Twitter
Blogging
“Make an appointment at Mayo Clinic”

“Find a gastroenterologist around New Haven”

“Connect me to a cardiologist”
Communities
Smartphones
Youngest Twitter user
Sometimes sharing too much
Augmented reality for colour blindness
Patients talking about their health management
Virtual meetings
Virtual meetings
Semantic Search
Serum levels
Asking questions
Looking for clinical trials
Support groups
Sending tweets to dad when he kicks mommy
Now it's a product
Alerting family members when elderly patients do not check in when taking their medications
App of the year 2011
Patients can meet and talk without borders
Checking body mass index on WolframAlpha
Blood pressure
Patients share photos taken during lunch or dinner at the hospital
They publish amazing content on individual blogs and blogging networks
One of the earliest and biggest patient community sites
Self-organized communities
What's happening here?
80% of people online
search
for health information


60%
consume social media


75-80% of online users are
e-patients
Pew Internet Research
What shall we do?
Medical professionals have to be better in 3 areas!
1
2
3
Communication
Approach
Online skills
Without jargons

With reliable sources

With clear explanation
Discussing the patient's questions (even those that are internet related)
One example:

Patient says she found information about her condition on a website.

Your question: "Where did you find that website?"

The patient gives you an answer.

Your question: "Did you see the HONcode, Webicina or HBCE logo on the website?

The patient answers: No.

Your answer: Then I cannot be sure that website medically is reliable, but here are 2 great resources written by professionals or fellow patients about your condition that I recommend reading.
Webicina curates social media resources


HONcode (Health on the Net Foundation) accredites websites



You should be open to e-patients, they want to be equal partners in the treatment therefore better compliance is expected and they can help you save time.
You should be able to assess the quality of medical websites.
Here are a few tips & suggestions:
Does the website feature contact information to the author(s)?

Do you find work address and affiliation?

Has it been updated for a long time?

Is it accredited by HONcode or Webicina?

Does it have a privacy policy and medical disclaimer?

Does it link to external and medical references in the entries?
Example 1
Example 2
Example 3
Advertisements everywhere, no author information, no description, no contact details, no disclaimer, no references in the entries, only ads!
A probably spam blog. Tell your patients to avoid these!
A clearly quality blog
Author information, contact details, blog description, archives, many RSS followers, good content, proper medical references.
It might seem tricky, but it's great!
Advertisements are placed in the center of the page, but author information, contact details, blog description, privacy policy and archives are available.
Best websites
Worst websites
a.k.a. spams
Fairly easy to catch these
Fairly easy to catch these
Assessing these is very tricky but the skill can be acquired if you try to assess the quality of websites often
Good ones and
bad ones
- Patients!
Sidenote: This is also the era of hypochondriacs
Be aware of it and help them!
Top 5 myths about empowered patients
Myth #1: All patients are empowered or becoming empowered

Myth #2: Most patients choose to be empowered

Myth #3: Health information-seeking ≠ empowerment

Myth #4: An empowered patient trumps the doctor

Myth # 5: Empowered patients are at odds with their doctor
E-patients are the
hackers
of the healthcare world!
Benefits of online engagement have been documented in the healthcare literature
Details have been described in a white paper.
CureTogether
Treatment ratings and reviews for 590 conditions.
A personal message to those attending this course
An amazing number of quality resources is available!
Pharmasurveyor.com
In 2012, he was diagnosed with skin cancer and wrote a Request for Proposals and sent to different companies.
The power of rare disease patients
Rare disease patients start clinical trials
Rare disease patients recruit for research studies
Rare disease patients change laws
Rare disease patients start their own biotech companies
But!
A must read
Full transcript