Patient Voices Network Forum: Consumer Health 2.0 Handout


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"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.

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Patient Voices Network Forum: Consumer Health 2.0 Handout

  1. 1. Consumer Health 2.0: Using social media to find andshare health informationElisheba Muturi, MLIS ( Hooker, MLIS ( Voices Network ForumApril 16, 2011Richmond, BC 1
  2. 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 10Workshop 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 2
  3. 3. Activity 1: A TALE OF TWO E-PATIENTS 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 donedifferently?3. What lessons do we learn from Megan and Julie’s cases? 3
  4. 4. Activity 2: ANALYSIS OF SCENARIOSThe following 4 scenarios are stories about real or potential medical experiences. Taking yourpersonal experience and what you have learned so far today, we would like you to consider oneof these scenarios and reflect on the course of action that the patient and health professionalshave 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 breastcancer patientAnne is a senior health administrator who was recently diagnosed with breast cancer. Followingher diagnosis, she was terrified because the initial information she received from the doctor wasdifficult to understand. Her doctor wrote:“Patient is…at high risk of recurrence of breast cancer by virtue of tumour size, tumour gradeand HER2/neupositivity. I would estimate her risk of recurrence to approximate 30 to 40%....thiscan be reduced to 15 to 20% in absolute terms with adjuvant chemotherapy…I went overpotential toxicities which could include alopecia, skin rash, mucousitis, nausea, vomiting,fatigue, 1% risk of potentially life-threatening haemorrhagic cystitis…1.5% risk of cardiotoxicityassociated 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 • 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. 4
  5. 5. Scenario 2: Carmen, LAM patient and Facebook userCarmen 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 theyre bothpatients who have been diagnosed with a disease called LAM, or lymphangioleiomyomatosis.Its rare, affecting just five in every million people. Its usually diagnosed in young women andcan be nasty. The disease slowly replaces healthy lung tissue with smooth muscle cells thatmake it harder and harder to breathe. For some people, lung transplants are their only hope ofstaying alive.Reategui had just been diagnosed with LAM and was very scared. Not only was Reateguistruggling with the LAM diagnosis, but the doctors had made another disturbing discovery: ahuge tumour on her left kidney. The doctors said they would operate to remove that kidney thatMonday.Iglesias knew that kidney tumours are common in LAM patients, but they are almost alwaysbenign. She wasnt sure what to tell Reategui, so she did what she does whenever she has aquestion about LAM — she logs into Facebook..LAM patients have a very active private group there in which they share information aboutmedications, surgery and lung transplants — even where to find bottled oxygen while onvacation. She asked the "Lammies" for help."And in a couple of hours, I had this huge, generous response from everybody saying, Stop theprocedure. Dont let anyone mess with the kidney, " she says.The women in the Facebook group explained that other options included embolization, whichwould shrink the tumour and might make it possible to spare the kidney. Iglesias calledReategui and translated the information into Spanish. She helped Reateguis father, MarcoNegrini, and helped him connect with a LAM specialist who could give the family a secondopinion. 5
  6. 6. Scenario 3: Pregnant JaneJane was expecting her first baby. When she went for routine prenatal genetic screening, shereceived a phone call from her doctor saying that the screening were positive for DownsSyndrome. She was extremely disturbed, as she first understood this to mean that her unbornchild had this condition. The “normal” cut-off mark was 1/300 chances of having the conditionand 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 gofor an amniocentesis as this was the only way to provide a definitive diagnosis of whether thiswas the case. She was concerned about the safety of the procedure and the doctor assured herthat 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 theamniocentesis procedure. She went to MedlinePlus and searched for information on prenataltesting and found useful information in plain language. She also went to the library and obtainedthe book “What to Expect when you are Expecting” which had a very useful explanation of whatthe screening test actually measured and the high likelihood of false positives: only 1-2 out of 50women testing positive for Downs Syndrome risk were confirmed to have babies with thecondition. It also explained that amniocentesis was extremely safe with only a 1/1600 chance ofcausing 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 toread their experiences of undergoing the amniocentesis procedure. Some with a 1/32 chance ofhaving a Downs baby had been found to have a normal and healthy baby. The amniocentesisprocedure caused discomfort for some but was well tolerated. 6
  7. 7. Questions for reflection on Scenarios 1-31) Why did the patients find themselves needing information beyond what they were gettingfrom their doctors?2) Comment on their approaches to finding and sharing information and resources? Would youuse 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? 7
  8. 8. Scenario 4: Ben, hidden kidney tumourFor many years, Ben received primary care from Dr Smith, who works in a practice at HospitalA. 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 backsymptoms, previously diagnosed as spinal stenosis and for which he and his orthopaedicphysician were considering surgery. Incidentally, the MRI showed evidence of “a cystic masspresent... 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 recallsbeing made aware of the renal findings at this time. Moreover, Dr Smith found no record of everreceiving a copy of this MRI report.Ben remembers being told of the kidney tumour 4 months later when he was seen for anotherfollow-up visit at Hospital B. He called Dr Smith about the findings; Dr Smith recommended CTevaluation, which was expeditiously arranged. The CT report noted a kidney tumour, which wasthen removed by a urologist. Ben recovered after a somewhat complicated hospital course. Hedecided to transfer his care from Dr Smith. Ben continues to have symptomatic spinal stenosisand 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 hadthe MRI, it showed that there was a mass in my kidney that clearly, as the report said, had to betaken care of. So, at Hospital B, the original hospital that did the MRI, nothing was done. Andnothing was done by my primary care physician, who supposedly had received a letter... I feltalone and uncared for. I knew that something was missed along the way and that there was adefinite lack of coordination between the hospitals and the doctors... there has to be somethingin place that puts responsibility on the person who discovers the problem, especially if its not inhis field.”Dr. Smith’s take: “The imaging study revealed an incidental finding that was significant. Itappears that the patient was not made aware of how important that was, if he was made awareat all. I never spoke to the ordering doctor. To this day, even after the finding, I never had anykind of contact with that person. Its just between me and the patient. In many instances, apatient has been seen by one specialist, referred to another subspecialist, and even onto athird. 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 amonth ago.” And I’m saying, “Well, when did you—you know, who did that?” “Well, some doctorat some outside place . . . ” I had no input.” 8
  9. 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 systemchange? 9
  10. 10. Recommended consumer healthwebsitesHealthLinkBC - “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 - “MedlinePlus is the National Institutes of Healths 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 - “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 - “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 - “More than 3,300 physicians, scientists and researchers from Mayo Clinic share their expertise to empower you to manage your health.” 10
  11. 11. - “ 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): ● - (Group-authored blog about technology and patient advocacy) ● Dana Jennings - (New York Times editor on prostate cancer) ● Rheumatoid Arthritis Warrior - (Kelly Young) ● Brass and Ivory - (MS blog by Lisa Emrich) ● Regina Holliday’s Medical Advocacy Blog - Blogs Wiki - “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 - (Dr. Val Jones) ● 33 Charts - (Dr. Bryan Vartabedian) ● Seattle Mama Doc Blog - (Dr. Wendy Sue Swanson) ● Dr. Wes - (Dr. Westby G. Fisher) ● Gary Schwitzer - (HealthNewsReview Blog) ● Well - (Tara Parker Pope, New York Times) 11
  12. 12. Other Resources: ● Compiled links for this forum are available at: ● Custom search engines ○ Healthline ○ MedHunt ○ HONselect ● Social Media 101 ○ Social Media University, Global (SMUG): http://social-media-university- ○ Commoncraft videos: ● Codes of ethics that promote trustworthy social media resources ○ ○ HONCode Web 2.0 bin/HONcode/ 12