This document discusses a collaborative research approach that taps into existing online patient communities to involve relevant patients. It aims to aggregate social data across networks to build patient profiles, then use semantic analysis and matching to connect research projects to patient communities. This is intended to facilitate more patient-centric, dynamic research by directly engaging patients and harvesting their real-world experiences and insights. A demo is available to show how the proposed platform could integrate and utilize data from different online health communities to match patients and research.

1. PATIENT CENTRIC
COLLABORATIVE RESEARCH
Accenture Technology Labs

2. Problem Problem Solution Value
¨ Finding and involving most relevant real-world patients in
patient centric collaborative research
¨ Our approach:
¤ “Fish where fishes are” by tapping into existing patient
social networks and communities
n e.g., PatientsLikeMe, MedHelp, dLife, myCancerPlace
¤ Aggregate social data across networks to build rich patient
population profiles
¤ Use our semantic analysis and matching engine to find
meaningful connections between research and patient
communities

3. Our Solution Problem Solution Value
Project Title & Description Patient Communities
Big Data & Multidimensional Big Data & Multidimensional
Semantic Analysis Semantic Analysis
Rich Project Profile Rich Patient Profile
Multidimensional Semantic
Match Engine
Matched Participants Across
Online Patient Communities

4. Value Problem Solution Value
¨ Connect patients, investigators, caregivers, and
administrators to facilitate patient centric, dynamic,
and responsive research.
¨ Craft realistic approaches to research, with the
patient as an integral part of the process.
¨ Harvest real-world patient experience and insights to
drive better cost and patient outcomes
¨ Engage patients in where they are (i.e., online
communities) in driving adoption of research findings
[future work]

5. Demo
¨ Due to patient privacy concerns, in this demo we
decided to use our own simulated patient community
Me-Med
¤ To
demonstrate the PCCR platform’s ability to integrate
and use patient from different online health
communities.
¨ Demo access: http://bit.ly/pccr_acn
¨ Demo invite code: acn techlabs dh 2013
¨ Me Med access: http://bit.ly/me_med_
¨ Me Med invite code: acn techlabs dh 2013