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

Paul AlbertDigital Services LibrarianWeill 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

ExamplesHow do I find a social 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 syndromeconversion disorderdelusionhistrionic personality disorderhypochondriahysterianeurosispsychosomatic disordersomatization disordersomatoform 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?

Anonymity

screenname: NotADog

Research other treatments

including some outside the

mainstream.

Source: kill-or-cure.heroku.com

Problem #2: Mixed messages about what

causes chronic disease

Glatiramer acetateBaclofenInterferon beta-1a SubQ injectionGabapentinVitamin DInterferon beta-1a IM InjectionModafinilOmega 3 Fish OilMultivitaminsIbuprofenNatalizumabInterferon beta-1b SubQ InjectionClonazepamTizanidine HClVitamin BLevothyroxineCalciumDuloxetinePregabalinFluoxetine

ZolpidemAlprazolamZolpidem TartratMethylprednisoloneNaltrexoneHydrocodoneEscitalopramAmantadineSertralineAspirinDiazepamVitamin CPrednisoneVenlafaxine Oxybutynin Citalopram Acetaminophen Topiramate Calcium plus Vitamin DAmitriptylineTramadolHydrocodone-Acetaminophen

Lorazepam Vitamin B ComplexVitamin ECyclobenzaprine Albuterol Simvastatin Vitamin Supplements Amphetamine-DextroamphetamineCoQ10 Omeprazole Tolterodine Lisinopril TrazodoneVitamin D3Methylphenidate4-Aminopyridine (4-AP)MagnesiumNexium Paroxetine Naproxen Hydrochlorothiazide

Treatment options There’s more than one!

The Appeal of First-Hand Experience

Images: Dr. Randall Wolcott

In some cases, it’s possible to

learn about treatments before

they become standard of care.

The Long Arc ofEvidence Based Medicine

4,500 patients start to enroll in

Wolcott trial

2002

1981

2003 2004 2005 2006 2007 2008 2009 2010

Trial concludes

Results published in Journal of Wound Care

Patients are unique – what works for Patient A

may not work for Patient B.

Also: you *need* to beable to think critically.

Otherwise...

But!

Zap!!!

Rheumatoid arthritis is caused

by failing to drink water?!

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?

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

What is the business model?

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.

Image: bit.ly/cW6k3D

THE END