Frost, J. et al.:Frost, J. et al.:Social Uses of Personal Health Social Uses of Personal Health Information Within PatientsLikeMeInformation Within PatientsLikeMe• This slideshow, presented at Medicine 2.0’08, Sept

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Social Uses of Personal Health Information Within PatientsLikeMeSocial Uses of Personal Health Information Within PatientsLikeMe

Jeana Frost and Michael MassagliJeana Frost and Michael Massagli4 September 20084 September 2008

Medicine 2.0: Social Networking and Web 2.0 Applications in Medicine and HealthMedicine 2.0: Social Networking and Web 2.0 Applications in Medicine and HealthToronto, CanadaToronto, Canada

Overview

• This project investigates some ways in which patients respond to the shared use of personal health data in a specific environment, the PatientsLikeMe online community for persons with amyotrophic lateral sclerosis (ALS).

• Identify and analyze patient-to-patient dialogues that referenced individual-level personal health data.

Overview, continued.

• Qualitative analysis reveals a variety of commenting and questioning behaviors

• Members referenced data – to locate others with particular experiences to answer

specific health-related questions, – to proffer personally acquired disease-management

knowledge to those most likely to benefit from it, and– to foster and solidify relationships based on shared

concerns.• New developments

Patients

Symptoms

Treatments

Partners

Research

• An open, on-line patient community focused on specific, life-changing disease states

• A patient-centered company creating new knowledge derived from the shared real-world disease experiences of patients

• Our Core Values put Patients First in how we approach our community development and commercial interests

• We fund PatientsLikeMe by selling data & responsible access to patients to payers, pharma, and medical device companies

• Current disease communities:

ALS (PLS, SMA), Multiple Sclerosis, Parkinson’s, HIV/AIDS,

Mood (Depression, Anxiety, Bipolar, PTSD, OCD)

What is PatientsLikeMe?

How do you know what to do?

• Patients will share private health information

Treatments, symptoms, outcomes Insight, support, value Over time

• Patients have answers and data What happens to a patient like me? What are the best treatments & products? What information do I believe? How/where can I get good care? How do I live the best I can?

• Limited real world outcome data

• Isolated knowledge on managing illness

• Limited evaluation of doctors, services, medical equipment

• Anecdotal data on alternative solutions

• The reality that physicians don’t have all the answers

TogetherAlone

How does PatientsLikeMe work?

SHAREPatients’ sharing detailed healthdata is what makes our communities special. Patients learn from each other through sharing of traditionally private data

LEARNPatients learn about treatment

options and what to expect from

each in our Treatment and

Symptom databases

FIND Patients’ find other patients like

them to learn what options are

available for treatment. Patients then

share information with their health

care team

A Profile

How does PatientsLikeMe work?

SHAREPatients’ sharing detailed healthdata is what makes our communities special. Patients learn from each other through sharing of traditionally private data

LEARNPatients learn about treatment

options and what to expect from

each in our Treatment and

Symptom databases

FIND Patients’ find other patients like

them to learn what options are

available for treatment. Patients then

share information with their health

care team

Treatment entry

Detailed Treatment & Symptom Information

Shared Patient Experiences

PatientsLikeMe charts the real world course of disease and how it impacts patients' lives

3,500+patients3,500+patients

550+Symptoms

550+Symptoms900+

treatments900+

treatments

17,000+posts

17,000+posts

Individual Long-term Outcomes

A Profile

Ways of using comments

(1) targeted questions to others with relevant experience,

(2) advice and recommendations, and(3) forming and solidifying relationships based

on similarity

Peer disease management

The first thing that I thought might be your Problem is malnutrition. Man, you’re losing weight crazy fast. I think you better consider getting Peg tube if you desire. They are easy to care for and are literally a life saver. What are your thoughts on this?

ALS Community

Anyone whowants to seewhat happenson a 2 monthdrug holiday just look at my updated VL and CD4 count.

After being taken off of old meds to track down some unwanted side affects. My VL spiked from undetectable up to 7,360 in a two month period.

Having been on new meds for 28 days my VL dropped precipitously. As of last Tuesday 220.

I must say also that a drug holiday is not what it once was. Not taking 8 relatively small easy to swallow pills a day just does not compare to not taking 30 giant rubberized stick to the back your throat pills a day. I just kinda feel like I am on a drug holiday all the time by comparison.

The impact of a drug holiday in HIVHIV Community Drug Holiday

Using shared data to drive treatment decisions

Before PatientsLikeMe:For years I had always taken just 10mg of Baclofen. I was told a long time ago by my old neuro that "too much Baclofen can cause weak legs". We'll yes, that maybe true but after 10 years, I probably should have re-inquired. whoops

Then:I sign up here. Take a peak at what you guys are doing, and find out I don't take enough Baclofen to deal with my symptoms. Give the neuro a call, no problem, and much, much, better.

MS Community

Patient Dosages for Baclofen

Information Based InsightsPatientsLikeMe is the main reason that I concluded I had been mis-diagnosed depressive, instead of bipolar, and just recently decided to try new medication.

Mood Community

Peer adherence to medication regimens

I'm having difficulty with med compliance. It started with not wanting to take my trazedone but now I'm fighting the urge to skip my lithium. That could be seriously bad news! Any thoughts?

The only thing I can suggest is that you make them so much a part of your routine that you almost don't think about them...that's the only thing that's worked for me. Another thing I did at one point was ask my p- doc (a very accomidating lady) to call me every other morning and ask if I'd taken my meds that day and the day before. I HATED lying to her because we had a good relationship, and so usually I took them.

Request for help

Personal Experience

Solutions

ResultsThank you, guys, for your ideas. I just got my meds upped due to a sudden change in mood (in two directions, fun!) so we'll see. I've

always been good about them so I hope this is an easier beastie to beat. Thank you again....

Can Patients Answer Clinical Questions as a Group?

A natural experiment on the effects of lithium in ALS

200+ ALS patients on lithium vs 2000+ controls (6 months post publication)

Testimony!