Skip to main content
Patient-Centered Outcomes Research Institute
Patient-Centered Outcomes Research Institute
  • Blog
  • Newsroom
  • Find It Fast
  • Help Center
  • Subscribe
  • Careers
  • Contact Us

PCORI

Patient-Centered Outcomes Research Institute

Search form

  • About Us
    Close mega-menu

    About Us

    • Our Programs
    • Governance
    • Financials and Reports
    • Procurement Opportunities
    • Our Staff
    • Our Vision & Mission
    • Contact Us

    Fact Sheets: Learn More About PCORI

    Download fact sheets about out work, the research we fund, and our programs and initiatives.

    Find It Fast

    Browse through an alphabetical list of frequently accessed and searched terms for information and resources.

    Subscribe to PCORI Email Alerts

    Sign up for weekly emails to stay current on the latest results of our funded projects, and more.

  • Research & Results
    Close mega-menu

    Research & Results

    • Explore Our Portfolio
    • Research Fundamentals
    • Research Results Highlights
    • Putting Evidence to Work
    • Peer Review
    • Evidence Synthesis
    • About Our Research

    Evidence Updates from PCORI-Funded Studies

    These updates capture highlights of findings from systematic reviews and our funded research studies.

    Journal Articles About Our Funded Research

    Browse through a collection of journal publications that provides insights into PCORI-funded work.

    Explore Our Portfolio of Funded Projects

    Find out about projects based on the health conditions they focus on, the state they are in, and if they have results.

  • Topics
    Close mega-menu

    Topics

    • Addressing Disparities
    • Arthritis
    • Asthma
    • Cancer
    • Cardiovascular Disease
    • Children's Health
    • Community Health Workers
    • COVID-19
    • Dementia and Cognitive Impairment
    • Diabetes
    • Kidney Disease
    • Medicaid
    • Men's Health
    • Mental and Behavioral Health
    • Minority Mental Health
    • Multiple Chronic Conditions
    • Multiple Sclerosis
    • Obesity
    • Older Adults' Health
    • Pain Care and Opioids
    • Rare Diseases
    • Rural Health
    • Shared Decision Making
    • Telehealth
    • Transitional Care
    • Veterans Health
    • Women's Health

    Featured Topic: Women's Health

    Learn more about the projects we support on conditions that specifically or more often affect women.

  • Engagement
    Close mega-menu

    Engagement

    • The Value of Engagement
    • Engagement in Health Research Literature Explorer
    • Influencing the Culture of Research
    • Engagement Awards
    • Engagement Resources
    • Engage with Us

    Engagement Tools and Resources for Research

    This searchable peer-to-peer repository includes resources that can inform future work in patient-centered outcomes research.

    Explore Engagement in Health Literature

    This tool enables searching for published articles about engagement in health research.

    Research Fundamentals: A New On-Demand Training

    It enables those new to health research or patient-centered research to learn more about the research process.

  • Funding Opportunities
    Close mega-menu

    Funding Opportunities

    • What & Who We Fund
    • What You Need to Know to Apply
    • Applicant Training
    • Merit Review
    • Awardee Resources
    • Help Center

    PCORI Funding Opportunities

    View and learn about the newly opened funding announcements and the upcoming PFAs in 2021.

    Tips for Submitting a Responsive LOI

    Find out what PCORI looks for in a letter of intent (LOI) along with other helpful tips.

    PCORI Awardee Resources

    These resources can help awardees in complying with the terms and conditions of their contract.

  • Meetings & Events
    Close mega-menu

    Meetings & Events

    • Upcoming
    • Past Events

    January 2021 Board of Governors Meeting

    The Board approved funding for a new research study relating to kidney health and a new funding allocation for PCORnet. Learn more

    Confronting COVID-19: A Webinar Series

    Learn more about the series and access recordings and summary reports of all six sessions.

    2020 PCORI Annual Meeting

    Watch recordings of all sessions, and view titles and descriptions of the posters presented at the virtual meeting.

You are here

  • Research & Results
  • Explore Our Portfolio
  • Accessible Research Commons for Healt...

This project has results

Accessible Research Commons for Health (ARCH)

Sign Up for Updates to This Study  

Results Summary and Professional Abstract

Results Summary

Results Summary

Download Summary

PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.

Clinical Data Research Networks (CDRNs) are one type of network supported by PCORI. CDRNs consist of two or more healthcare systems, including hospitals, integrated delivery systems, and federally qualified health centers. Each CDRN transforms data gathered from routine patient care across its participating health systems to a consistent format, the Common Data Model (CDM), to enable rapid response to research-related questions.

PCORI funded Accessible Research Commons for Health’s (ARCH) participation in PCORnet from 2015 to 2019. This report outlines ARCH’s achievements in building its research infrastructure capacity to

  1. Create ways to involve patients, healthcare providers, health plans, and health systems in the research process and decision making about the network
  2. Continue building the PCORnet CDM to add new types of data, ensure data quality, answer questions and requests, link to data outside the network, and keep data secure and private
  3. Create an efficient infrastructure to carry out clinical trials
  4. Create rules and guidance to protect people who take part in research studies, keep participants’ information confidential, and examine the risks of proposed studies
  5. Work with PCORnet partners and partners outside the network to do research studies, build information systems, and share knowledge and practices
  6. Create a plan to fund the network after PCORI funding ends

Network at a glance

Led by Harvard Medical School, ARCH brought together 13 medical centers from across the country. These centers contributed data to help researchers study a wide variety of health conditions.

Title Accessible Research Commons for Health (ARCH)
Network design Clinical Data Research Network (CDRN)
Lead partner Harvard Medical School Department of Biomedical Informatics
Other partners Beth Israel Deaconess Medical Center
BJC HealthCare
Boston Children’s Hospital
Boston Medical Center
Brigham and Women’s Hospital
Columbia University
Grady Memorial Hospital
Houston Methodist Hospital
Massachusetts General Hospital
Morehouse School of Medicine
University of California Davis Medical Center
University of Texas Health Science Center
Wake Forest Baptist Health
Population 2,108,824 patients who received care at participating healthcare systems

How does the network operate?

ARCH created a governance committee with the goal of making it clear how all decisions were made and ensuring that many people had input into the decision-making process. The committee’s main responsibilities included overseeing the ARCH research agenda, developing and approving the ARCH strategic plan, and voting on proposed policies and processes.

This committee was made up of leaders from each medical center partner, another member who represented patients’ viewpoints, and the heads of other network committees. ARCH made agreements with each medical center partner on how to use and share data. A single Institutional Review Board, or IRB, made sure studies were ethical and protected participants.

ARCH made sure network partners stored patient data securely and followed strict security rules. It also ensured that data used to answer research questions could not be used to identify patients.

How did the network involve patients and other partners?

In every part of its work, ARCH involved patients, families, and caregivers; healthcare providers; researchers; healthcare system administrators; health advocacy groups; and Patient-Powered Research Networks (PPRNs), which are networks that are operated and governed by patient groups and their partners and that are focused on particular conditions or populations.

Together a patient and a medical care provider led the network’s engagement committee. This committee created policies and activities to increase involvement from people such as patients, families, and caregivers. The network made sure that all studies that use ARCH data include a plan that outlines how patients will be involved in the study. The network also used citizen scientists and patient liaisons who gave ideas on how to involve patients in research studies. ARCH held a meeting each year that brought together the leads from each partner site, network committee members, patient liaisons, and other people interested in ARCH to develop plans to improve the network.

Who is in the network?

As of June 30, 2019, the network had data for 2,108,824 people who received care through a partner network hospital or clinic. Data sources included electronic health records, patient-reported outcomes, and Medicare and Medicaid data. ARCH developed processes to check data and improve data quality. All partner sites supplied data using the Common Data Model. Data are available from January 1, 2010.

Population (as of 06/30/19)

Race/ethnicity

  • 66% white
  • 19% other
  • 15% black
  • 2% Hispanic

Sex

  • 60% female
  • 40% male

Age

  • 10% 20 years or younger
  • 30% 21–44 years
  • 34% 45–64 years
  • 16% 65–74 years
  • 11% 75+ years

How is the network supporting research?

While a Partner Network in PCORnet, ARCH participated in 25 research projects. The network also collaborated with two PPRNs.

How does the network support future research?

CDRNs follow PCORI standards to make sure their networks continue after PCORI’s funding ends. CDRNs format their data to the CDM and involve patients and healthcare providers in planning and carrying out research studies. CDRNs also take part in research with other networks in PCORnet and build relationships outside of PCORnet.

Glossary

Clinical Data Research Networks (CDRN): CDRNs are networks that originate in healthcare systems, such as hospitals, health plans, or practice-based networks, and securely collect health information during the routine course of patient care.

Common Data Model (CDM): A CDM establishes a standard way of defining and formatting data.

Institutional Review Board (IRB): A group that follows federal regulations, state laws, and institutional policy to review, monitor, and approve research in order to protect the ethical rights and privacy of the subjects involved.

Patient-Powered Research Networks (PPRN): PPRNs are operated and governed by patient groups and their partners and are focused on particular conditions or populations.

PCORnet: PCORnet is a network of networks that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research.

Printable Abstract

Overview

PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.

Clinical Data Research Networks (CDRNs) are one type of network supported by PCORI. CDRNs consist of two or more healthcare systems, including hospitals, integrated delivery systems, and federally qualified health centers. Each CDRN transforms data gathered from routine patient care across its participating health systems to a consistent format, the Common Data Model (CDM), to enable rapid response to research-related questions.

PCORI funded Accessible Research Commons for Health’s (ARCH) participation in PCORnet from 2015 to 2019. This report outlines ARCH’s achievements in developing and optimizing research infrastructure capacity to

  1. Engage patients, practicing clinicians, health plans, and health systems meaningfully in network governance and the research process
  2. Continue building the PCORnet CDM to support new data elements, maintain high-quality data sets, respond to queries, link to external data sources, and ensure patient privacy and data security
  3. Establish an efficient infrastructure for conducting clinical trials
  4. Develop research oversight infrastructure that protects research subjects, preserves participants’ confidentiality, and evaluates the risks of proposed studies
  5. Collaborate with PCORnet and external partners to conduct research studies, build infrastructure, and share knowledge and practices
  6. Develop a plan for financial sustainability beyond the PCORI infrastructure-funding period

Network Infrastructure

Led by Harvard Medical School’s Department of Biomedical Informatics, ARCH brought together 13 major medical centers from across the country to contribute data that enable researchers to study a wide variety of health conditions.

Title Accessible Research Commons for Health (ARCH)
Network design Clinical Data Research Network (CDRN)
Lead partner Harvard Medical School Department of Biomedical Informatics
Other partners Beth Israel Deaconess Medical Center
BJC HealthCare
Boston Children’s Hospital
Boston Medical Center
Brigham and Women’s Hospital
Columbia University
Grady Memorial Hospital
Houston Methodist Hospital
Massachusetts General Hospital
Morehouse School of Medicine
University of California Davis Medical Center
University of Texas Health Science Center
Wake Forest Baptist Health
Population 2,108,824 patients who received care at participating healthcare systems

Network Governance and Operations

ARCH established a governance committee guided by consensus building and transparency. The committee’s main responsibilities were oversight of the ARCH research agenda, development and approval of the ARCH strategic plan, and voter participation on proposed policies and standard operating procedures. This committee included the principal investigator from each participating institution, a patient co-investigator, and the chairs of other network committees. All committee members, including patients, could vote on decisions involving their committee. ARCH developed data sharing and data use agreements that were adopted by all sites. A single streamlined Institutional Review Board (IRB) superseded individual partners’ IRBs.

Network partners stored patient data securely behind HIPAA-compliant firewalls. To answer research questions, the network provided de-identified data following stringent security procedures.

Stakeholder Engagement

ARCH identified six key stakeholder groups that were critical to the network’s success: patients, families, and caregivers; clinicians and providers; researchers; healthcare system leaders; health advocacy groups; and Patient-Powered Research Networks (PPRNs), which are networks that are operated and governed by patient groups and their partners and that are focused on particular conditions or populations. Stakeholders from each group engaged in all aspects of network governance, including the ability to vote on committees, and research activities. Patient stakeholders participated in and had voting privileges on both governance and study submission and review committees.

A patient and clinician co-led the network’s engagement committee, which developed policies and activities to increase stakeholder involvement. The network also created guidance which requires all studies using ARCH data to include an engagement plan that outlines how researchers should incorporate patients’ perspectives and experiences into the study. The network also worked with citizen scientists and patient liaisons who offered strategies on how to involve patients in research. ARCH held a meeting each year that brought together principal investigators from each site, network committee members, patient liaisons, and other ARCH stakeholders to develop strategies to improve the network.

Network Demographics

As of June 30, 2019, the network compiled data for 2,108,824 people who received care through a partner network hospital or clinic. Data sources included electronic health records, patient-reported outcomes, and Medicare and Medicaid claims data. ARCH developed processes to assess and improve data quality. All partner sites contributed data using the Common Data Model. Data are available from January 1, 2010.

Population Demographics (as of 06/30/19)

Race/ethnicity

  • 66% white
  • 19% other
  • 15% black
  • 2% Hispanic

Sex

  • 60% female
  • 40% male

Age

  • 10% 20 years or younger
  • 30% 21–44 years
  • 34% 45–64 years
  • 16% 65–74 years
  • 11% 75+ years

Demonstrating Research Capacity

While a Partner Network in PCORnet, ARCH participated in 18 observational retrospective studies and 7 clinical trials. The network also collaborated with two PPRNs.

Future Opportunities

ARCH follows PCORI standards to enhance the sustainability of the network, including adhering to the CDM, fostering patient and clinician engagement at all stages of the research process, participating in multinetwork PCORnet research, and building external collaborations.

Journal Articles

Related Articles

International Journal of Environmental Research and Public Health

The Association of Black Cardiologists (ABC) Cardiovascular Implementation Study (CVIS): A Research Registry Integrating Social Determinants to Support Care for Underserved Patients

Big Data Research

kluster: An Efficient Scalable Procedure for Approximating the Number of Clusters in Unsupervised Learning

American Heart Journal

High-dose influenza vaccine to reduce clinical outcomes in high-risk cardiovascular patients: Rationale and design of the INVESTED trial

Journal of the American Heart Association

Prediction Score for Anticoagulation Control Quality Among Older Adults

Clinical Pharmacology and Therapeutics

Identifying Patients With High Data Completeness to Improve Validity of Comparative Effectiveness Research in Electronic Health Records Data

Journal of the American Medical Informatics Association

Biases introduced by filtering electronic health records for patients with “complete data”

Amia Joint Summits on Translational Science Proceedings

Incorporating Data Citation in a Biomedical Repository: An Implementation Use Case

The Journal of Pediatrics

A Computable Phenotype Improves Cohort Ascertainment in a Pediatric Pulmonary Hypertension Registry

The Amerian Journal of Psychiatry

Predicting Suicidal Behavior From Longitudinal Electronic Health Records

Engagement Resources

Stakeholder Engagement Policy

More on this Project  

View Phase I Award

Project Details

Principal Investigator
Kenneth Mandl, MD, MPH
Project Status
Completed; PCORI Public and Professional Abstracts Posted
Project Title
Scalable Collaborative Infrastructure for a Learning Healthcare System (SCILHS)
Project End Date
June 2019
Organization
President and Fellows of Harvard College
Year Awarded
2015
State
Massachusetts
Year Completed
2019
Project Type
PCORnet: Clinical Data Research Networks (CDRN) Phase II
Project Budget
$9,135,741
Study Registration Information
HSRP20162056
Page Last Updated: 
November 26, 2019

About Us

  • Our Programs
  • Governance
  • Financials and Reports
  • Procurement Opportunities
  • Our Staff
  • Our Vision & Mission
  • Contact Us

Research & Results

  • Explore Our Portfolio
  • Research Fundamentals
  • Research Results Highlights
  • Putting Evidence to Work
  • Peer Review
  • Evidence Synthesis
  • About Our Research

Engagement

  • The Value of Engagement
  • Engagement in Health Research Literature Explorer
  • Influencing the Culture of Research
  • Engagement Awards
  • Engagement Resources
  • Engage with Us

Funding Opportunities

  • What & Who We Fund
  • What You Need to Know to Apply
  • Applicant Training
  • Merit Review
  • Awardee Resources
  • Help Center

Meetings & Events

January 21
Cycle 1 2021 Broad PFA Applicant Town Hall
February 2
PCORI 2021 and Beyond: Opportunities for Funding and Involvement in Patient-Centered Research
February 9
Board of Governors Meeting: February 9, 2021

PCORI

Footer contact address

Patient-Centered Outcomes
Research Institute

1828 L Street, NW, Suite 900
Washington, DC 20036
Phone: (202) 827-7700 | Fax: (202) 355-9558
[email protected]

Subscribe to Newsletter

Twitter Facebook LinkedIn Vimeo

© 2011-2021 Patient-Centered Outcomes Research Institute. All Rights Reserved.

Privacy Policy | Terms of Use | Trademark Usage Guidelines | Credits | Help Center