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In the News: Building PCORnet as a Secure Platform for Outcomes Research

April 17, 2014 by Joe Selby, MD, MPH, PCORI.org

As we’ve begun the 18-month development of PCORnet, the National Patient-Centered Clinical Research Network, many people have expressed their excitement about the promise of this ambitious effort. After all, PCORnet aims to harness the potential of the vast amounts of health care data stored in electronic medical records—and the energy of activated patients—to transform outcomes research and speed answers to patients’ foremost health questions.

Read full post …

PCORnet Overview: Master Slidedeck for Presenters

This is the “master” slide deck that explains PCORnet in detail, including the rationale behind it, what it will do to achieve its goals, and how it is structured.

It is expected that there will be some tailoring of content for the specific audience and the purpose of the presentation, but we encourage presenters to use slides 4-19 as they appear here.

Slides in the Appendix provide supplemental detail about member networks and Task Force activities.

PCORnet 15-minute Master Slidedeck (pptx) …

Grand Rounds: May 2 – Michael Becich, MD

A Shared Forum of the NIH Health Care Systems Research Collaboratory and PCORnet

Speaker: Michael Becich, MD, PhD
Department of Biomedical Informatics
University of Pittsburgh School of Medicine

Topic: Translational Informatics: From PCORI to NCI to BD2K – The Pittsburgh Roadmap for Unlocking the Value of Health Data from EHRs

Date: Friday, May 2, 2014, 1:00-2:00 p.m. ET

Join the conversation on Twitter: @PCTGrandRounds  #pctGR
Pragmatic Clinical Trials Grand Rounds are hosted weekly by the NIH HCS Research Collaboratory and PCORnet.
https://twitter.com/PCTGrandRounds

Also follow: @Collaboratory1 and @PCORnetwork

Rethinking Clinical Research

Meeting Info:  To check whether you have the appropriate players installed for UCF (Universal Communications Format) rich media files, go to https://dukemed.webex.com/dukemed/systemdiagnosis.php.

To join the online meeting:

Go to https://dukemed.webex.com/dukemed/j.php?MTID=maa34f9ef93cb519f0dbee9afd7ada9a7

  1. You must log in to the URL first. If prompted to use a password, please use 1234.
  2. Click ‘Audio Conference’
  3. Choose ‘I will call in’, select the Toll Free number.
  4. Dial in using the information from the dialog box that appears.
    Be certain to use the Access Code AND the Attendee ID.

Note: If the URL above does not work, go to dukemed.webex.com and enter:
Meeting Number: 739 773 050
Meeting Password: 1234

For Audio ONLY:
Call-in toll-free number (US/Canada): 1-855-244-8681
Access code: 739 773 050

MEETING FORMAT:

  • Audio for all attendees is muted upon entry to the meeting.
  • The first 30 minutes consists of the presentation.
  • Pose your questions or submit comments via the Chat Pod (select ‘Everyone’ from the Send to drop-down menu to allow viewing by all attendees). The presenter will use the questions posed in the Chat Room to initiate discussion/ Q&A following the presentation.
  • Attendees who wish to ask or respond to a question during the Q&A session must un-mute themselves before speaking; re-apply the mute function once the discussion is completed.

Do you use the Google Chrome or Mozilla Firefox web browser?

Follow these steps to enable the WebEx plug-in:

  1. Select the Join link that appears in your email invitation or instant message, or select Join in your meeting list or the meeting space on your WebEx site.
  2. If you have not already installed the Cisco WebEx meeting application software, install it now.
  3. If the WebEx software is installed, you will see the Join meeting page with a small icon near the address bar that will allow you to enable the WebEx plug-in.

Google Chrome:

  1. Click the plug-in icon in the upper-right corner of the browser window.
  2. Choose Always allow plug-ins on your WebEx site.
  3. Click Done.
  4. If the meeting doesn’t start automatically, click the Refresh link to reload the page.

Mozilla Firefox:

  1. Click the plug-in icon in the upper-left corner of the browser window, left of the address bar.
  2. Choose Allow and Remember.
  3. If the meeting does not start automatically, click the Refresh link to reload the page.

Call for Papers: JAMIA Issue on Biomedical Data Standards

The Journal of the American Medical Informatics Association announces a Call for Papers for a Special focus Issue on Biomedical Data Standards

Summary of Special Focus Issue

JAMIA guest editors Drs. Rachel Richesson (PCORnet Rare Diseases Task Force) and Christopher Chute are soliciting submissions on the role and use of biomedical data standards in the exchange and analysis of biomedical data for a special focus issue on biomedical data standards. The goal of the focus issue is to provide a forum for the latest evaluation of standards in the contexts of meaningful use, biomedical research, clinical analytics, and big data.  Standards of interest include those that cover any part of the spectrum of biomedical data, from molecular determinants to population health. Contributions focusing on the state-of-the-art for specific domain standards, together with overviews outlining the present context and integration of biomedical data comparability and integration are welcome.

Specific information and details about this special call for papers can be found here.

General information about the journal can be found at http://jamia.bmj.com.

Manuscript submission deadline: July 1, 2014.

In the News: Researchers Leverage Database of Chicago Residents to Address Health Disparities

Greg Goth, Health Data Management. Posted April 14, 2014

A consortium of health data researchers in Chicago is leveraging work on several projects and a recent $7 million round of funding from the Patient-Centered Outcomes Research Institute to advance both study recruitment and quantitatively-based public health delivery.

The PCORI-funded project, the Chicago Area Patient-Centered Clinical Outcomes Research Network, or CAPriCORN, will create a common base of de-identified information on more than 1 million Chicago residents, with the intention of making study recruitment and analysis much easier across participating institutions. The people behind the work also believe they may be taking a big step toward meeting the elusive goal of providing large amounts of data that is also “cleaner” than unfiltered public-facing data such a Google Flu Trends or other crowdsourced outlets for action by public health officials and long-term initiatives by policymakers.

Read more …

In the News: Scientists embark on unprecedented effort to connect millions of patient medical records

By Ariana Eunjung Cha, The Washington Post. Published: April 15 

Inside an otherwise ordinary office building in lower Manhattan, government-funded scientists have begun collecting and connecting together terabytes of patient medical records in what may be one of the most radical projects in health care ever attempted.

The data — from every patient treated at one of New York’s major hospital centers over the past few years — include some of the most intimate details of a life. Vital signs. Diagnoses and conditions. Results of blood tests, X-rays, MRI scans. Surgeries. Insurance claims. And in some cases, links to genetic samples.

Read more …

Why PCORnet Exists

PCORnet, the National Patient-Centered Clinical Research Network, will transform clinical research by engaging patients, care providers and health systems in collaborative partnerships to improve healthcare and advance medical knowledge. By bringing research and patient care together, this innovative health data network will be able to explore the questions that matter most to patients and their families. >> More

View the full overview.

Resource Center Office Hours: April 28 – Lisa Schlager, Megan O’Boyle, and Susan Redline

Web Conference Meeting Info: Monday, April 28, 2014
Time: 11:00 am-12:00 pm (noon), Eastern Standard Time

The following Partners will introduce their Networks and be available to answer questions related to PCORnet activities and to discuss opportunities for collaboration:

Lisa Schlager – ABOUT Network: American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network PPRN
Vice President of Community Affairs

Megan O’Boyle – Phelan-McDermid Syndrome Foundation PPRN
Chair of the Registry and Repository Committee and board member of the Phelan-McDermid Syndrome Foundation

Susan Redline, MD, MPH – SAPCON: Sleep Apnea Patient Centered Outcomes Network PPRN
Senior Physician, Division of Sleep and Circadian Disorders, Departments of Medicine and Neurology, Brigham and Women’s Hospital

Call for volunteers to present!  Get better acquainted with our PCORnet partners and identify potential points of collaboration.

We’re accepting volunteers to introduce their Networks during Office Hours.  Contact Rebecca (Becky) Wilgus, RN, MSN, to volunteer or ask questions:
919.668.8897 (O) | 919.971.4629 (M)
[email protected]

Meeting Number: 731 295 426
Meeting Password: 1234

——————————————————-
To join the online meeting
——————————————————-
Go to https://dukemed.webex.com/dukemed/j.php?MTID=mdcf3112206e44a304d27fbfaa7b81f7e

——————————————————-
Audio conference information
——————————————————-
Call-in toll number (US/Canada): 1-650-479-3207

Grand Rounds: April 25 – Cynthia Hahn and Petra Kaufman, MD

A Shared Forum of the NIH Health Care Systems Research Collaboratory and PCORnet

Speakers: Cynthia Hahn, VP, Clinical Research and Regulatory Affairs
North Shore-LIJ Health System

Petra Kaufmann, MD, MSc, Director, Office of Clinical Research, National Institute of Neurological Disorders and Stroke
National Institutes of Health

Topic: CTTI Advancing the Use of Central IRBs Project: Academic Institution and Government Sponsor Perspectives

Date: Friday, April 25, 2014, 1:00-2:00 p.m. ET

Join the conversation on Twitter: @PCTGrandRounds  #pctGR
Pragmatic Clinical Trials Grand Rounds are hosted weekly by the NIH HCS Research Collaboratory and PCORnet.
https://twitter.com/PCTGrandRounds

Also follow: @Collaboratory1 and @PCORnetwork

Rethinking Clinical Research

Meeting Info:  To check whether you have the appropriate players installed for UCF (Universal Communications Format) rich media files, go to https://dukemed.webex.com/dukemed/systemdiagnosis.php.

To join the online meeting:

Go to https://dukemed.webex.com/dukemed/j.php?MTID=maa34f9ef93cb519f0dbee9afd7ada9a7

  1. You must log in to the URL first. If prompted to use a password, please use 1234.
  2. Click ‘Audio Conference’
  3. Choose ‘I will call in’, select the Toll Free number.
  4. Dial in using the information from the dialog box that appears.
    Be certain to use the Access Code AND the Attendee ID.

Note: If the URL above does not work, go to dukemed.webex.com and enter:
Meeting Number: 739 773 050
Meeting Password: 1234

For Audio ONLY:
Call-in toll-free number (US/Canada): 1-855-244-8681
Access code: 739 773 050

MEETING FORMAT:

  • Audio for all attendees is muted upon entry to the meeting.
  • The first 30 minutes consists of the presentation.
  • Pose your questions or submit comments via the Chat Pod (select ‘Everyone’ from the Send to drop-down menu to allow viewing by all attendees). The presenter will use the questions posed in the Chat Room to initiate discussion/ Q&A following the presentation.
  • Attendees who wish to ask or respond to a question during the Q&A session must un-mute themselves before speaking; re-apply the mute function once the discussion is completed.

Do you use the Google Chrome or Mozilla Firefox web browser?

Follow these steps to enable the WebEx plug-in:

  1. Select the Join link that appears in your email invitation or instant message, or select Join in your meeting list or the meeting space on your WebEx site.
  2. If you have not already installed the Cisco WebEx meeting application software, install it now.
  3. If the WebEx software is installed, you will see the Join meeting page with a small icon near the address bar that will allow you to enable the WebEx plug-in.

Google Chrome:

  1. Click the plug-in icon in the upper-right corner of the browser window.
  2. Choose Always allow plug-ins on your WebEx site.
  3. Click Done.
  4. If the meeting doesn’t start automatically, click the Refresh link to reload the page.

Mozilla Firefox:

  1. Click the plug-in icon in the upper-left corner of the browser window, left of the address bar.
  2. Choose Allow and Remember.
  3. If the meeting does not start automatically, click the Refresh link to reload the page.