Accelerating Data Value Across a National Community Health Center Network (ADVANCE)

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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 Accelerating Data Value Across a National Community Health Center Network, or ADVANCE’s, participation in PCORnet from 2015 to 2018. This report outlines ADVANCE’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 in decision making about the network
2. Continue to build 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 healthcare research
4. Create rules and guidance to protect people who take part in research studies, keep participants’ information confidential, and assess 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

ADVANCE is a CDRN that represents more than 5 million patients at community health centers across the country. OCHIN, Inc., leads ADVANCE. Health Choice Network, or HCN; Fenway Health; and Oregon Health & Science University, or OHSU, provide outpatient patient data to the network. Another partner, Robert Graham Center/Health Landscape, provides community-level data to study the effect of environmental and external factors on health. ADVANCE focuses on safety net health centers, which care mostly for vulnerable patients with low incomes.

How does the network operate?

The ADVANCE Advisory Council guided the network. The council included one patient co-investigator, healthcare providers from the three partners, and members of OCHIN’s community-based board of directors. The council made sure that the network collected, stored, and used patient data in a way that protected patients.

The council made policies for

• Data sharing
• Data use within ADVANCE, across PCORnet, and with partners outside PCORnet
• Data integration into the CDM
• Adding and approving new data elements
• Transparency of patient data use in research

An executive committee oversaw management and coordination of the network.

How did the network involve patients and other partners?

ADVANCE supported a patient engagement panel to find and train patients and caregivers to share their views of and priorities for planning and conducting research. Panel members, patients, and caregivers provided input during the research process. They advised on creating research questions, designing and conducting research studies, analyzing results, and sharing findings with the public. The Panel also gave input on how changes to healthcare delivery affect patients and ways to engage patients in their own care. The ADVANCE project team also funded a patient investigator on the network’s leadership team. ADVANCE also supported the Practice-based Research Network, or PBRN, at OCHIN. Through the PBRN, healthcare providers could take part in studies and provide data. They also acted as study advisors and investigators. ADVANCE worked with Boston University and OHSU to create resources to involve patients and communities in research.

Who is in the network?

ADVANCE has information for more than 44.6 million clinic visits for 5 million patients. Patient information comes from OCHIN, HCN, and Fenway Health. The CDM contains all information for patients who had a primary care, mental health, or dental visit in a safety net setting since January 1, 2012. It has some earlier information as well.

How is the network supporting research?

ADVANCE researchers carried out 27 research studies using the network’s data. These researchers also used the network’s data to identify specific groups of patients, such as patients who are obese, have diabetes, or have a rare disease, who received care in safety net settings. Data from these groups might be of interest for future studies.

How does the network support future research?

ADVANCE formed research interest groups focused on sexual and gender minorities, health policy, and chronic disease. ADVANCE brought together national experts from 10 PCORnet Partner Networks to take part in these interest groups. ADVANCE plans to work with other PCORnet Partner Networks on these topics. The network is also studying how the places where people live, learn, work, and play affect their health. To make future research easier, ADVANCE worked to improve ways to collect information about patients’ insurance status and to link data about patients, their communities, and the environment.

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.

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

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 the Accelerating Data Value Across a National Community Health Center Network’s (ADVANCE) participation in PCORnet from 2015 to 2018. This report outlines ADVANCE’s achievements in building its research infrastructure capacity to

1. Create mechanisms to engage patients, practicing clinicians, health plans, and health systems meaningfully in network strategies 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 healthcare research
4. Develop research oversight infrastructure that protects research participants, preserves 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 OCHIN, Inc., ADVANCE represents more than 5 million patients at community health centers (CHCs) nationwide. Partners Health Choice Network (HCN), Fenway Health, and Oregon Health & Science University (OHSU) contribute ambulatory patient data to the network. Another partner, Robert Graham Center/Health Landscape, provides community-level data to study the effect of environmental and external factors on health. ADVANCE focuses on safety net health centers, which care primarily for vulnerable patients with low incomes.

Network Governance and Operations

OCHIN housed the ADVANCE Advisory Council (AAC), the network’s formal governing body. The AAC included one patient co-investigator, clinician representatives from each participating system, and members of OCHIN’s community-based board of directors. The AAC ensured that the collection, management, and use of patient data occurred in a manner that protected patients and was consistent with the missions and values of the many healthcare systems involved in ADVANCE. Specifically, the AAC made policies for

• Data sharing
• Data use within ADVANCE, across PCORnet, and with external partners
• Data integration into the CDM
• Adding and approving new data elements
• Transparency of patient data use in research

An executive committee oversaw network management and coordination.

Stakeholder Engagement

ADVANCE supported a patient engagement panel to help recruit and train patients and caregivers to share their perspectives on and priorities for planning and conducting research. Panel members provided input on developing research questions, how changes to healthcare delivery affect patients, sharing research findings with the public, involving patients in research, and improving health technologies to engage patients in their own care. Patients and caregivers also offered input on study design and materials, recruitment strategies, data analysis, and dissemination plans. The ADVANCE project team also funded a patient investigator.

ADVANCE also supported the OCHIN Practice-based Research Network (PBRN), a network-wide resource to get input from practicing clinicians on the feasibility, acceptability, and impact of research studies on vulnerable patients and safety net practices. Clinician members of the PBRN acted as study participants, data contributors, study advisors, or investigators. ADVANCE also collaborated with Boston University and OHSU to create shared resources for patient- and community-engaged research.

Network Demographics

ADVANCE has data from more than 44.6 million clinic encounters for more than 5 million patients. The CDM contains all historic data for patients who had a primary care, behavioral health, or dental visit in a safety net setting since January 1, 2012. Claims, vital signs, and community vital signs data are available for some subsets of the population.

Demonstrating Research Capacity

ADVANCE researchers have undertaken 10 observational studies, 3 mixed-methods studies, 1 clinical trial, 1 methodology study, 1 qualitative study, 1 secondary data analysis, and 10 other studies. ADVANCE researchers have also used network data to identify and describe cohorts of safety net patients, including cohorts of patients with overweight and obesity, diabetes, and rare diseases.

Future Opportunities

ADVANCE has formed research interest groups focused on sexual and gender minorities, social determinants of health, health policy, and chronic disease. ADVANCE brought together national experts from 10 PCORnet networks to participate in these interest groups. ADVANCE plans to work with other PCORnet networks to work on these topics.

ADVANCE’s work to support future research includes

• Improving ways to include insurance enrollment in future versions of the CDM
• Adding fields to the CDM that support safety net research
• Linking individual- and community-level data on social determinants of health, cancer registry data and vital statistics, and maternal and child health