Social Networks for e-Patients Sharing Accurate, Current Information and Data

ACORCommunities

ACORCommunities

ACORCommunities

ACORCommunities

Started 1995, initially as central archival site for cancer listservs

Community center started 19961996

No commerce, no ads, no fluff!

Purely an information provider & community builder

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HISTORYHISTORY

165165 public communities and 5050 private

All communitiesAll communities have closed archives. ACOR is part of the deep webdeep web

Current membership: 60K60K

Served >600K>600K subscribers since 19961996

Delivering on average ~ 1,5 Million~ 1,5 Million emails weekly

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STATSSTATS

STATSSTATS

Community size: from 60 subscribers to 3K.

Optimal size for active groups: 1-3 K. Could be larger

Many cancer are orphan diseases. But disease specific community of 1,000s. Can represent significant % of patient population

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Helping cancer e-patients. Worldwide.

Promoting dissemination of scientific information in a supportive environment

Facilitating personal story sharing, with emphasis on medically or QOL significant events

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GOALS: ACTIVATIONGOALS: ACTIVATION

Access to relevant & current information

Bypassing built-in ‘Lethal Lag Time’

Research opportunities with patient participation

Data collection from within communities

Clinical trial recruitmentECCO :: 25/09/11 6

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GOALS: ACCELERATIONGOALS: ACCELERATION

Knowledge is in constant Beta

No individual can fully keep up with medical currency

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ISSUES: KNOWLEDGEISSUES: KNOWLEDGE

•Much that is problematic of the professional, as the purveyor of expert knowledge, derives from the fact that she/ he is at most only one step ahead of enlightened lay practitioners.

•Anthony GiddensThe Consequences of Modernity, 1999

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ISSUES: KNOWLEDGEISSUES: KNOWLEDGE

It’s not the size of the data that kills you, it’s the size of the metadata.

The methods of social science are dear in time and money and getting dearer every day.

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ISSUES: DATAISSUES: DATA

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ISSUES: LETHAL LAG-TIMEISSUES: LETHAL LAG-TIME

•We just can’t wait any longer

•It takes an average of 17 years to implement clinical research results in daily practice

•Andrew Balas, MD, PhD, 2000

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ISSUES: LETHAL LAG TIMEISSUES: LETHAL LAG TIME

The plural of anecdote is NOT data

Large compendiums of patient conversations are more than anecdotes

More than 3/4 of medical interventions are either self-help or take place without any healthcare professional

Scientists & doctors are patients too

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ISSUES: CONVERSATIONSISSUES: CONVERSATIONS

The patient is the most underutilized resource of the healthcare system.

Let Patients Help!

Making the user the point of integration has the potential to be profoundly different & more efficient than current practices

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SOLUTIONSSOLUTIONS

SOCIODEMOGRAPHICSSOCIODEMOGRAPHICS

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Health Status

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Other Status

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SOCIODEMOGRAPHICSSOCIODEMOGRAPHICS

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With Gleevec & GIST, ACOR saved many lives & record-breaking trial accrual

Myeloma group conducted ground-breaking post-marketing study on biphosphanates and necrosis of the jaw

For renal cell carcinoma, patients from 1 major institution: they learn they would never be told of the only potentially curative treatment

Across system, daily conversations about side effects that are not found in FDA public documentation

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RESULTSRESULTS

Zometa approved in Feb. 2002, as successor to Aredia

Approval of 15 minute infusion without any mention of kidney toxicity or high creatinine level

IMF/ACOR’s MYELOMA start to receive reports of high creatinine levels, some with serious renal failure

After getting advice from experts messages to MYELOMA telling everyone that infusion time MUST be 30 minute

Kidney issues from Zometa dramatically reducedECCO :: 25/09/11 17

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ADVERSE EVENT REPORTADVERSE EVENT REPORT

Osteo Necrosis of the Jaw (ONJ) reported in 2 studies of Zometa (2003,2004)

MYELOMA group started telling members talking any biphosphanates they should avoid any invasive procedure to the jaw - tooth extraction a common trigger

IMF used MYLEOMA group to conduct survey. 904 members responded in 30 days, captured data for diagnosis, treatments & complications

Results published at ASH, FDA ODAC & NEJM (Durie, Katz, Crowley; 07/07/05, p99)

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ADVERSE EVENT REPORTADVERSE EVENT REPORT

Social networks of rare cancer patients are often the best source of high quality information. Rethink what are authoritative answersauthoritative answers

Networked patients are inventing and shaping a better healthcare model

LET PATIENTS HELP!

We have seen nothing yet!ECCO :: 25/09/11 19

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•Doctors will get off their pedestals when patients get off their knees

•- Dr. Tom Ferguson

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