Social networking for patients: what you need to know about online forums

Social networking for patients: what you need to know about online forums Paul Albert Digital Services Librarian Weill Cornell Medical College October 7, 2010

A social network is an online community that offers ways for users to interact. Image: http://bit.ly/9XCsLl

w do I find a Ho Examples socia l network?

Some doctors are suspicious of social networks. Social networks... LOL!

This device cures all cancer in five days!

Why go online? Image: bit.ly/aGFas3

Some benefits of social networks 1. Emotional support 2. Practical support 3. Anonymity 4. Research treatments: what works? what can I expect?

Illness is isolating. Am I alone?

Crippled by fatigue and cognitive dysfunction I withdrew completely. The toll on my family was immense. It was as if I became the insect of Kafka’s metamorphosis. I discovered I could no longer tolerate bright lights or loud noise. All I could do was lie alone, in the dark, inside a quiet room.... I was extremely lonely and extremely scared.

101 euphemisms for all in your head Briquet's syndrome conversion disorder delusion histrionic personality disorder hypochondria hysteria neurosis psychosomatic disorder somatization disorder somatoform disorder

How do I... find generic medications? cut up my pills? find wheelchair accessible buildings? talk to my family about my illness? find food without additives? manage a side effect? appeal an insurance denial? get leave of absence w/o losing job?

screenname: NotADog Anonymity

Resear ch other treatments including some o utside the mainstream.

Source: kill-or-cure.heroku.com

Problem messag causes

Glatiramer acetate Zolpidem Lorazepam Baclofen Alprazolam Vitamin B Complex Interferon beta-1a SubQ Zolpidem Tartrat Vitamin E injection Methylprednisolone Cyclobenzaprine Gabapentin Naltrexone Albuterol Vitamin D Hydrocodone Simvastatin Interferon beta-1a IM Injection Escitalopram Vitamin Supplements Modafinil Omega 3 Fish Oil Trea tment options Amantadine Sertraline Amphetamine- Dextroamphetamine Multivitamins There’s m ore than one! Aspirin CoQ10 Ibuprofen Diazepam Omeprazole Natalizumab Vitamin C Tolterodine Interferon beta-1b SubQ Prednisone Lisinopril Injection Venlafaxine Trazodone Clonazepam Oxybutynin Vitamin D3 Tizanidine HCl Citalopram Methylphenidate Vitamin B Acetaminophen 4-Aminopyridine (4-AP) Levothyroxine Topiramate Magnesium Calcium Calcium plus Vitamin D Nexium Duloxetine Amitriptyline Paroxetine Pregabalin Tramadol Naproxen Fluoxetine Hydrocodone-Acetaminophen Hydrochlorothiazide

The Appeal of First-Hand Experience

In some cases, it’s possible to learn about tr eatments before they become sta ndard of care. Images: Dr. Randall Wolcott

981 The Long Arc of Evidence Based Medicine 4,500 patients Results published start to enroll in in Journal of Trial concludes Wound Care Wolcott trial 2002 2003 2004 2005 2006 2007 2008 2009 2010

But! Patients are unique – what works for Patient A may not work for Patient B. Also: you *need* to be able to think critically. Otherwise...

Zap!!!

ritis is caused R heumat oid arth drink w ater?! by fa iling to

The Spooky World of Alternative Medicine

Evaluating a social network 1. Is the site a pleasure to use? 2. How many patients have X? 3. What is the funding model? 4. How is the site moderated? 5. What is the mood? 6. What tools are available?

What is the business model? We take the information patients share about their experience with the disease, and sell it in a de-identified, aggregated and individual format to our partners (i.e., companies that are developing or selling products to patients). These products may include drugs, devices, equipment, insurance, and medical services. We do not rent, sell or share personally identifiable information for marketing purposes or without explicit consent. - PatientsLikeMe statement on funding

Moderators 1. Are they paid or volunteers? 2. What are their credentials? 3. Is the site actively moderated? 4. Do they enforce expectations? Image: bit.ly/9oXpiV

Is misery contagious? Image: New York Times Source: BMJ, 2008;337:a2338

Common Tools 1. Messaging 2. Track personal progress 3. Find similar patients 4. Data analysis

} Data analysis

New technologies inevitably become integrated into patient care. That it [the stethoscope] will ever come into general use, notwithstanding its value, I am extremely doubtful…. there is something even ludicrous in the picture of a grave physician formally listening through a long tube applied to the patient's thorax, as if the disease within were a living being that could communicate its condition to the sense without. Sir John Forbes, 1821

We had a patient who read on her cousin’s Facebook page that we had helped heal a diabetic foot ulcer. This patient came from 200 miles away to see if we can help her save her remaining leg. She was told by local physicians the leg had to be removed. We think the wound is healable. The fact is most patients choose a physician based on word-of-mouth information, and many many people get this information via social networking.

THE END Image: bit.ly/cW6k3D

Social networking for patients: what you need to know about online forums

by Paul Albert

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Social networking for patients: what you need to know about online forums Presentation Transcript