"Consumer Health 2.0: Using social media to find and share health information." A handout of supplemental information and activities to support the presentation given to the Patient Voices Network Forum, "Voices in Action" on April 16, 2011.

1. Consumer Health 2.0: Using social media to find and
share health information
Elisheba Muturi, MLIS (en_muturi@yahoo.ca)
Daniel Hooker, MLIS (daniel.h@ubc.ca)
Patient Voices Network Forum
April 16, 2011
Richmond, BC
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2. Contents
1. Workshop Agenda 2
2. Activity 1: Video response questions 3
3. Activity 2: Scenario descriptions and questions 4
i. Scenario 1 4
ii. Scenario 2 5
iii. Scenario 3 6
iv. Questions for reflection on Scenarios 1-3 7
v. Scenario 4 8
vi. Questions for reflection on Scenario 4 9
4. Recommended consumer health websites 10
Workshop Agenda
1. Introductions
2. Viewing 7 mins
3. Activity 1: Video Response 10 mins
4. Interactive lecture 25 mins
5. Activity 2: Scenario analysis 20 mins
6. Questions / Wrap-up 10 mins
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3. Activity 1: A TALE OF TWO E-PATIENTS
http://www.youtube.com/watch?v=9ebdGR3IZp8
Questions to consider as you watch this video:
1. What did Megan, the patient who got better, do right? What were her obstacles?
2. Where did Julie, the patient who didn’t make it, go wrong? What could she have done
differently?
3. What lessons do we learn from Megan and Julie’s cases?
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4. Activity 2: ANALYSIS OF SCENARIOS
The following 4 scenarios are stories about real or potential medical experiences. Taking your
personal experience and what you have learned so far today, we would like you to consider one
of these scenarios and reflect on the course of action that the patient and health professionals
have taken so far, the patient care and health system issues involved, and what you would do.
Questions for reflection follow. Share your thoughts and discuss the questions with your group.
After 10-15 minutes, report back when we re-convene as a workshop.
Scenario 1: Anne, health administrator and breast
cancer patient
Anne is a senior health administrator who was recently diagnosed with breast cancer. Following
her diagnosis, she was terrified because the initial information she received from the doctor was
difficult to understand. Her doctor wrote:
“Patient is…at high risk of recurrence of breast cancer by virtue of tumour size, tumour grade
and HER2/neupositivity. I would estimate her risk of recurrence to approximate 30 to 40%....this
can be reduced to 15 to 20% in absolute terms with adjuvant chemotherapy…I went over
potential toxicities which could include alopecia, skin rash, mucousitis, nausea, vomiting,
fatigue, 1% risk of potentially life-threatening haemorrhagic cystitis…1.5% risk of cardiotoxicity
associated with Adriamycin and 5 to 10% risk of cardiotoxicity associated with Herceptin...”
As she thought about her treatment options, she had plenty of questions about:
• Physician competence?
• Right dose, right duration, right combination?
• Effects of delayed treatment?
• Short-term side effects/how to deal with them? Long-term side effects?
• Behaviour (diet, exercise)?
• Accuracy of testing?
• Where do I fit in the probabilities?
She sought and found information through various sources:
• BC Cancer Agency chemotherapy protocols: patient handout, physician instructions
• Breastcancer.org with 87 000 members in 67 forums discussing 70 000 topics. This
proved useful for connecting with patients with exactly the same strain of cancer, and
finding out who was on what treatment and finding doctor rating information. She was
concerned about her privacy but using a pseudonym made her feel more secure. She
also didn’t have to post content but could benefit by reading about other people’s
experiences.
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5. Scenario 2: Carmen, LAM patient and Facebook user
Carmen Iglesias in St. Louis learned that a young woman in Paterson, N.J., needed her help.
Karla Reategui had been hospitalized with a collapsed lung.
Reategui and Iglesias have two things in common: They both speak Spanish and they're both
patients who have been diagnosed with a disease called LAM, or lymphangioleiomyomatosis.
It's rare, affecting just five in every million people. It's usually diagnosed in young women and
can be nasty. The disease slowly replaces healthy lung tissue with smooth muscle cells that
make it harder and harder to breathe. For some people, lung transplants are their only hope of
staying alive.
Reategui had just been diagnosed with LAM and was very scared. Not only was Reategui
struggling with the LAM diagnosis, but the doctors had made another disturbing discovery: a
huge tumour on her left kidney. The doctors said they would operate to remove that kidney that
Monday.
Iglesias knew that kidney tumours are common in LAM patients, but they are almost always
benign. She wasn't sure what to tell Reategui, so she did what she does whenever she has a
question about LAM — she logs into Facebook.
.
LAM patients have a very active private group there in which they share information about
medications, surgery and lung transplants — even where to find bottled oxygen while on
vacation. She asked the "Lammies" for help.
"And in a couple of hours, I had this huge, generous response from everybody saying, 'Stop the
procedure. Don't let anyone mess with the kidney,' " she says.
The women in the Facebook group explained that other options included embolization, which
would shrink the tumour and might make it possible to spare the kidney. Iglesias called
Reategui and translated the information into Spanish. She helped Reategui's father, Marco
Negrini, and helped him connect with a LAM specialist who could give the family a second
opinion.
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6. Scenario 3: Pregnant Jane
Jane was expecting her first baby. When she went for routine prenatal genetic screening, she
received a phone call from her doctor saying that the screening were positive for Downs
Syndrome. She was extremely disturbed, as she first understood this to mean that her unborn
child had this condition. The “normal” cut-off mark was 1/300 chances of having the condition
and her screening results indicated that her baby had 1/160 chances of having the condition.
The doctor further said that the screening test can be a false positive and encouraged her to go
for an amniocentesis as this was the only way to provide a definitive diagnosis of whether this
was the case. She was concerned about the safety of the procedure and the doctor assured her
that it was a very safe procedure with minimal risk.
Jane was very anxious about the meaning of the test results, her baby’s risk and the
amniocentesis procedure. She went to MedlinePlus and searched for information on prenatal
testing and found useful information in plain language. She also went to the library and obtained
the book “What to Expect when you are Expecting” which had a very useful explanation of what
the screening test actually measured and the high likelihood of false positives: only 1-2 out of 50
women testing positive for Downs Syndrome risk were confirmed to have babies with the
condition. It also explained that amniocentesis was extremely safe with only a 1/1600 chance of
causing a miscarriage which assured her even though the standard in BC is 1/200 chance.
The most reassuring thing Jane did was to search an online forum of expectant mothers and to
read their experiences of undergoing the amniocentesis procedure. Some with a 1/32 chance of
having a Downs baby had been found to have a normal and healthy baby. The amniocentesis
procedure caused discomfort for some but was well tolerated.
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7. Questions for reflection on Scenarios 1-3
1) Why did the patients find themselves needing information beyond what they were getting
from their doctors?
2) Comment on their approaches to finding and sharing information and resources? Would you
use the same approach? What would you change?
3) What are the risks or precautions they should be aware of? What are the consequences
(good and bad) of their information seeking?
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8. Scenario 4: Ben, hidden kidney tumour
For many years, Ben received primary care from Dr Smith, who works in a practice at Hospital
A. Troubled by hip and back pain, Ben sought care at Hospital B from various subspecialists.
Approximately 8 months ago, Ben had an MRI performed at Hospital B to evaluate his back
symptoms, previously diagnosed as spinal stenosis and for which he and his orthopaedic
physician were considering surgery. Incidentally, the MRI showed evidence of “a cystic mass
present... further evaluation is recommended.”
The MRI report indicated that a “copy” was sent to the specialist at Hospital B and to the “PCP.”
However, neither the specialist at Hospital B, nor Ben, nor his primary care physician recalls
being made aware of the renal findings at this time. Moreover, Dr Smith found no record of ever
receiving a copy of this MRI report.
Ben remembers being told of the kidney tumour 4 months later when he was seen for another
follow-up visit at Hospital B. He called Dr Smith about the findings; Dr Smith recommended CT
evaluation, which was expeditiously arranged. The CT report noted a kidney tumour, which was
then removed by a urologist. Ben recovered after a somewhat complicated hospital course. He
decided to transfer his care from Dr Smith. Ben continues to have symptomatic spinal stenosis
and physical therapy and may have more surgery.
Ben’s take: “I really felt that the whole condition was missed, because back in June, when I had
the MRI, it showed that there was a mass in my kidney that clearly, as the report said, had to be
taken care of. So, at Hospital B, the original hospital that did the MRI, nothing was done. And
nothing was done by my primary care physician, who supposedly had received a letter... I felt
alone and uncared for. I knew that something was missed along the way and that there was a
definite lack of coordination between the hospitals and the doctors... there has to be something
in place that puts responsibility on the person who discovers the problem, especially if it's not in
his field.”
Dr. Smith’s take: “The imaging study revealed an incidental finding that was significant. It
appears that the patient was not made aware of how important that was, if he was made aware
at all. I never spoke to the ordering doctor. To this day, even after the finding, I never had any
kind of contact with that person. It's just between me and the patient. In many instances, a
patient has been seen by one specialist, referred to another subspecialist, and even onto a
third. And each one of them thinks the other doctor is a referring doctor. So, you have no input.
And sometimes I’ve had people come back and say, “I had my knee done, a new knee done a
month ago.” And I’m saying, “Well, when did you—you know, who did that?” “Well, some doctor
at some outside place . . . ” I had no input.”
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9. Questions for reflection on Scenario 4:
1) Is there a way Ben could have been a more active partner in his care during this process?
What about his physicians?
2) Is there any opportunity for patient networks in this scenario?
3) What role do you think Consumer Health 2.0 and e-patients can play in health system
change?
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10. Recommended consumer health
websites
HealthLinkBC - http://www.healthlinkbc.ca/
“The Health Link BC website provides information on over 4,000 health topics,
symptoms, and over-the-counter and prescription drugs and offers tips for maintaining a
healthy lifestyle. The site also offers an integrated search and mapping function to over
2,500 health services to help British Columbians find health services close to their home
communities.”
MedlinePlus - http://www.nlm.nih.gov/medlineplus/
“MedlinePlus is the National Institutes of Health's Web site for patients and their families
and friends. Produced by the National Library of Medicine, it brings you information
about diseases, conditions, and wellness issues in language you can understand.
MedlinePlus offers reliable, up-to-date health information, anytime, anywhere, for free.”
Health Libraries Association of BC (HLABC) Consumer Health Portal -
http://hlabcconsumerhealthportal.pbworks.com/
“This wiki contains links to useful sites for online Consumer Health Information (health
information for patients), with a focus on information related to British Columbia.” This
portal also contains information on assessing information quality. Though some sections
are tailored to librarians, on the whole this is a very well developed resource of use to
any interested consumer or patient.
BC Cancer Agency Chemotherapy Guidelines -
http://www.bccancer.bc.ca/HPI/ChemotherapyProtocols/
“The staff of the BC Cancer Agency Systemic Therapy Program have placed summaries
of specific treatment protocols on the website. The summaries are those in current use
by the Systemic Therapy Program staff at all regional cancer centres. The date of last
revision will be visible at the end of the protocol summary.”
Mayo Clinic - http://www.mayoclinic.com/health-information/
“More than 3,300 physicians, scientists and researchers from Mayo Clinic share their
expertise to empower you to manage your health.”
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11. HealthNewsReview.org - http://healthnewsreview.org/
“HealthNewsReview.org is a website dedicated to improving the accuracy of news
stories about medical treatments, tests, products and procedures, and helping
consumers evaluate the evidence for and against new ideas in health care. We support
and encourage the ABCs of health journalism: Accuracy, Balance, Completeness.”
e-Patient White Paper by Tom Ferguson, MD [PDF]
“The old Industrial Age paradigm, in which health professionals were viewed as the
exclusive source of medical knowledge and wisdom, is gradually giving way to a new
Information Age worldview in which patients, family caregivers, and the systems and
networks they create are increasingly seen as important healthcare resources... [G]iven
the recognition and support they deserve, these new medical colleagues can help us
find sustainable solutions to many of the seemingly intractable problems that now
plague all modern healthcare systems.”
Patient Blogs (to name a few):
● e-Patients.net - http://e-patients.net/ (Group-authored blog about technology and patient
advocacy)
● Dana Jennings - http://well.blogs.nytimes.com/tag/jennings/ (New York Times editor on
prostate cancer)
● Rheumatoid Arthritis Warrior - http://rawarrior.com/ (Kelly Young)
● Brass and Ivory - http://www.brassandivory.org/ (MS blog by Lisa Emrich)
● Regina Holliday’s Medical Advocacy Blog - http://reginaholliday.blogspot.com/
ePatient Blogs Wiki - http://epatientblogs.wikispaces.com/
“An international directory that aims to identify and promote epatient bloggers in order to
support their activities, advance their aims, and promote their voices. Blogs are recorded
by disease state, and also by country.”
Health and Physician blogs (to name a few):
● Better Health - http://getbetterhealth.com/ (Dr. Val Jones)
● 33 Charts - http://33charts.com/ (Dr. Bryan Vartabedian)
● Seattle Mama Doc Blog - http://seattlemamadoc.seattlechildrens.org/ (Dr. Wendy Sue
Swanson)
● Dr. Wes - http://drwes.blogspot.com/ (Dr. Westby G. Fisher)
● Gary Schwitzer - http://www.healthnewsreview.org/blog/ (HealthNewsReview Blog)
● Well - http://well.blogs.nytimes.com/ (Tara Parker Pope, New York Times)
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12. Other Resources:
● Compiled links for this forum are available at: http://www.delicious.com/tag/pvnforum11
● Custom search engines
○ Healthline http://www.healthline.com/
○ MedHunt http://www.hon.ch/MedHunt/
○ HONselect http://www.hon.ch/HONselect/.
● Social Media 101
○ Social Media University, Global (SMUG): http://social-media-university-
global.org/curriculum/
○ Commoncraft videos: http://www.commoncraft.com/videos#technology
● Codes of ethics that promote trustworthy social media resources
○ http://medbloggercode.com/
○ HONCode Web 2.0 http://www.hon.ch/cgi-
bin/HONcode/guidelines_comments_en.pl
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