Sachin Kheterpal (UMich): Concludes with industry engagement. Industry needs feedback on participants (they need to see value) #PMINetwork
11:10am February 11th 2015 via Hootsuite
Blue Button is a collection of specifications, mostly 'document-centric'. For Precision med need a data-centric method. #PMINetwork
11:06am February 11th 2015 via Hootsuite
Masys: 'Blue Button" function: rights to access copies of EHR data. Idea: "Synch for Science" (S4S) to transmit to data center #PMINetwork
11:04am February 11th 2015 via Hootsuite
Josh Denny: Need site-specific expertise to mine data on a site-specific basis. (Comment: a HARD problem.) #PMINetwork
11:03am February 11th 2015 via Hootsuite
Masys: Data from heterogeneous systems: data privacy a problem; combination of structured & unstructured data. #PMINetwork
11:02am February 11th 2015 via Hootsuite
Chisholm:Trade-offs of standardized data from everyone via EHR, or an open possibility across existing cohorts. #PMINetwork
10:59am February 11th 2015 via Hootsuite
Masys: Challenge of human & business models: a new consent model infrastructure. #PMINetwork
10:58am February 11th 2015 via Hootsuite
Daniel Masys: "Opportunities and challenges related to the use of electronic health records data for research" #PMINetwork
10:57am February 11th 2015 via Hootsuite
Q (Google Life Sciences):Phenotypic variability built-into this cohort? A: We're building a platform, can't predict outcome. #PMINetwork
10:52am February 11th 2015 via Hootsuite
Q: Where's the center for std. of data and data-quality? Patrick: Effort is starting, getting better, RW Johnson involved #PMINetwork
10:50am February 11th 2015 via Hootsuite
Ledbetter: The point is how to integrate data-collection into participant's daily life, w/o interruption of 'workflow'. #PMINetwork
10:48am February 11th 2015 via Hootsuite
Comment: "48% responded to web-based questionnaire; the subset w/smartphones had much better health (metrics)". #PMINetwork
10:47am February 11th 2015 via Hootsuite
Patrick:Tomorrow - a notion for making it 'as lightweight as possible'; also UX and UD very impt. Engagement is not unsolvable #PMINetwork
10:43am February 11th 2015 via Hootsuite
Chris Austin (NCATS)'s Q: "We'll run into realities of human behavior. Regular people won't continue this. A huge problem." #PMINetwork
10:42am February 11th 2015 via Hootsuite
Rick Cnossen from Intel: We need to have a crisp standardized dataset; yet w/sth. new, it will evolve & change. #PMINetwork
10:40am February 11th 2015 via Hootsuite
Patrick:Also mentions a new culture of participatory research, including competitions for continued engagement. #PMINetwork
10:39am February 11th 2015 via Hootsuite
Patrick:Genome, microbiome, EMR, behavioral, social, precise geospatial, multiple influences between & among these understood #PMINetwor
10:38am February 11th 2015 via Hootsuite
Patrick: Companies that capture data 'typically own it' - how do we access it for research? >All< data need opening up. #PMINetwork
10:37am February 11th 2015 via Hootsuite
Patrick: Now with mobile: GPS, sensors, ECG; a digital rendering. Need stds for sensor data 'a Wild West out there' #PMINetwork
Patrick: Cellphone penetration, correlated to genome data. Then presented challenges of trad longitudinal assessment #PMINetwork
10:30am February 11th 2015 via Hootsuite
Kevin Patrick: The world has gone mobile: can engage cohorts undreamed of just a few years ago. #PMINetwork
10:29am February 11th 2015 via Hootsuite
Pettigrew:Creating of a new public culture: participation in a new kind of research. Data collection / mobile is critical. #PMINetwork
10:27am February 11th 2015 via Hootsuite
Roderic Pettigrew: "Data collection and mobile technologies". For this, tying in many types of data. Sensors, genetic, social #PMINetwork
10:26am February 11th 2015 via Hootsuite
Roderic Pettigrew: "Data collection and mobile technologies
10:23am February 11th 2015 via Hootsuite
O'Rourke: 'We have to have a reason (for them) to sign up and continue on'; 'here's my membership card & I'm proud of it' #PMINetwork
10:15am February 11th 2015 via Hootsuite
O'Rourke:Q:Few physicians (<10%) involved w/any clinical research A:Empowered participants will drag clinicians along. #PMINetwork
10:11am February 11th 2015 via Hootsuite
.@BioWorld (P O'Roarke is at Partners in Boston by the way.)
10:09am February 11th 2015 via Hootsuite in reply to
O'Rourke:Q:Mention of 'protocol' at odds w/participation? A:Can't approve an idea; need a clear plan for data collection. #PMINetwork
10:08am February 11th 2015 via Hootsuite
O'Rourke:'an incredible opp'y to responsibly advance genomics into precision care'. Also: create new paradigm for engagement #PMINetwork
10:05am February 11th 2015 via Hootsuite
O'Rourke: First proposed sol'n: 'Streamline research oversight that maintains protection.' acknowledges difficulty of this task. #PMINetwork
10:02am February 11th 2015 via Hootsuite
O'Rourke:Current oversight process (fed, state laws) far from optimal for large, distributed study. #PMINetwork
10:01am February 11th 2015 via Hootsuite
O'Rourke: Mentioned multi-platform access and gamification for data collection to make it fun - to get ongoing involvement #PMINetwork
10:00am February 11th 2015 via Hootsuite
O'Rourke:Need to go beyond trad. recruitment. Consult with existing cohort participants. Low-cost to participate #PMINetwork
O'Rourke:Allow for change of values over time in addition to levels of participation. Families? Governance will be necessary. #PMINetwork
9:58am February 11th 2015 via Hootsuite
O'Rourke:Think of value: Framingham framed in a sense of 'belonging' to something. Individual values/pref's respected #PMINetwork
9:56am February 11th 2015 via Hootsuite
O'Rourke:Toolkis between participants & providers - what's in it for everyone; financial considerations; confirmatory tests #PMINetwork
9:55am February 11th 2015 via Hootsuite
O'Rourke:Research/clinical is no longer 'boundary', rather it is 'intersection'. All parties - incl. providers - need involvment #PMINetwork
9:54am February 11th 2015 via Hootsuite
O'Rourke:New landscape - needs to be inclusive, flexible. 'What is "it"?' Specific goals? Kinds of participation? #PMINetwork
9:53am February 11th 2015 via Hootsuite
Pearl O'Rourke: "Participant engagement, data privacy, and novel ways of returning information to participants: #PMINetwork
9:51am February 11th 2015 via Hootsuite
Boerwinkle:Q:Different cohort design (i.e. children vs. parents) A:It won't be Framingham 'on steriods' necessarily. Later topic #PMINetwork
9:42am February 11th 2015 via Hootsuite
Boerwinkle:Q:Early discovery vs. building a resource? A:We need both; disclosed to both participants and researchers. #PMINetwork
9:40am February 11th 2015 via Hootsuite
.@adamauton @ScDevCanc Streaming is fine here (DC suburbs)
9:38am February 11th 2015 via Hootsuite in reply to
Boerwinkle:We shouldn't be too gene- or genome-focused; need a wider focus, also wide on phenotypes as well #PMINetwork
9:37am February 11th 2015 via Hootsuite
Lauer: Mechanism for rapid, efficient randomized trials; an enormous 'scientific commons'. Eric Boerwinkle acknowledged #PMINetwork
9:32am February 11th 2015 via Hootsuite
Lauer:Framingham was the 1st time 'elevated risk' term was used, but long time to evaluate. Big, audacious ideas now accelerated #PMINetwork
9:31am February 11th 2015 via Hootsuite
Lauer:Possible to change the dynamic between participants and researchers; a two-way relationship. #PMINetwork
9:29am February 11th 2015 via Hootsuite
Lauer:Gov't coordination 'is huge'. Either can accelerate or stymie progress. Key goal: advise on policy, mgmt, direction #PMINetwork
9:27am February 11th 2015 via Hootsuite
Lauer:Technology second concern; rapidly evolving, can leverage what is now, and grow with it. Bidirectional internet, mobile... #PMINetwork
9:25am February 11th 2015 via Hootsuite
Lauer:First concern: Expense, time and feasibility: key point is not from scratch. Existing data, recruitment, data, methods #PMINetwork
9:24am February 11th 2015 via Hootsuite
Lauer: Lays out a key feature: to get major communication across cohort studies. Illust. w/ Dr. Dover / Framingham as a model #PMINetwork
9:23am February 11th 2015 via Hootsuite
