panel: where do we get information?- sally okun

Consumers United for Evidence-based Healthcare 2013 Annual Membership Meeting

July 26, 2013

Sally Okun, VP Advocacy, Policy & Patient Safety

Panel: Where do we get our information?

Using social networking sites to find out what is important to patients

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Who we are

Patients can: Learn about living

with and treating disease

Connect with others who have the same condition

Connect with others with shared interests

Track personal health history and progress

Participate in their care and be better prepared

a patient-powered research network that measures what matters to real people

PROPRIETARY & CONFIDENTIAL

Individual Experiences => Collective Knowledge

April 9, 2023 PROPRIETARY & CONFIDENTIAL

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PatientsLikeMe started with 12 communities

Now nearly 2000 conditions represented

Over 200,000 members Each year, we see:

● 3.3 million private messages

● 1.2 million profiles views

● 400,000 forum posts

● 5-10% of newly diagnosed MS, ALS patients join

A Range of Tools for Patient Reported & Generated Data

Health-related QoL

Symptoms Severity

Functional Impact

Treatment impact Effectiveness

Adherence

Side Effects

Self-monitor tools BP

Weight

InstantMe

Condition specific Primary outcomes

Labs & Tests

History Medical history

Life events

Lessons from the PatientsLikeMe Community

April 9, 2023 PROPRIETARY & CONFIDENTIAL

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After using PatientsLikeMe… 71% HIV patients agreed or

strongly agreed that they took more of an interest in their lab values

63% of members agreed they had a better understanding of the consequences of taking a “drug holiday”

12% of members changed their physician

Only 10% of time are ALS patients told about cognitive symptoms yet 66% want to know

Sharing Health Data => Shared Insights

Wicks & Fountain (2012) Patient assessment of physician performance of epilepsy quality of care measures. Neurology Clinical Practice 2:335

53%

54%

Patient Illuminate Gaps in Evidence-based Care

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Leonard Kish recently called patient engagement “the blockbuster drug of the century.”

He opined, “If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.”

Open Registry => Transparent Openness

A well-defined population studied under controlled conditions

Patients are subjects, not partners in the research since research is designed to test against a specific question or clinical insight

A well-defined, growing population fitting inclusion and exclusion criteria

Patients only interact with researchers during the study

Comprehensive patient population where researchers can integrate new questions and measures anytime

Patients are proactively involved in research and can interact regularly with researchers

Offers 360 degree view of patients, 365 days a year

Traditional Clinical Research

Traditional Patient Registry

PatientLikeMe’s Open Registry

April 9, 2023 PROPRIETARY & CONFIDENTIAL

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www.openresearchexhange.com

To learnlisten well

to impressionsvoiced by

patients first.Sally Okun

sokun@patientslikeme.com