“Delivering Results, Informing Choices.” That was the theme of the 2017 Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, and PCORI naturally wanted to showcase how its most ambitious effort to date is bringing that theme to life. That’s why it’s no surprise that PCORnet, the National Patient-Centered Clinical Research Network, was front and center at the event, which was held Oct. 31–Nov. 2 in Arlington, Virginia.
In fact, a full-day workshop titled, “PCORnet in Action: Utilizing PCORnet for Research,” was a central component of the Annual Meeting. Speakers at the workshop shared how researchers are beginning to use PCORnet the way its creators always envisioned: to ask and answer the questions that matter most to patients in a way that makes research faster and better than it has been to date.
The workshop included three panel discussions, with the first featuring actual users of PCORnet who discussed how the Network added value to their studies. These speakers also showed how the studies are engaging patients and providers, an important part of PCORI’s mission. A highlight was Rebekah Angove, engagement director of the REACHnet partner network, who talked about her work with the Louisiana Experiment Assessing Diabetes (LEAD) study. This study is looking at how policy changes are affecting patients with diabetes in Louisiana. Angove outlined some of the strategies her study team is using to ensure that the voices of patients and clinicians are included.
Building on Angove’s discussion of patient engagement, Andrew Nierenberg, principal investigator of the Mood Network, talked about PCORnet’s ability to grow existing relationships where trust is already established.
“Trust is the engine for
adding value to a study.
Andrew Nierenberg, MD – PI, Mood Network
Finally, Maureen Smith, principal investigator of the ADVANCE partner network, described another PCORnet demonstration study, which is looking at ways to design a better system for managing the health information of older patients. Older patients often see multiple physicians and frequently receive health care from emergency departments and hospitals. This study allowed multiple health systems to compare the effectiveness and cost of their Case Management Programs to other health systems, while remaining de-identified. That way, if one health system showed patients with better outcomes than another, it wouldn’t be public, and yet systems could still use the information to improve their programs. Smith said that many health systems could benefit from PCORnet’s networked infrastructure and Common Data Model.
Getting to Know PCORnet Resources
The second panel discussion focused on the resources available through PCORnet. Kiely Law, principal investigator of the Interactive Autism Network, specifically called out the efforts of the PCORnet Engagement Committee, which seeks to equally and effectively engage people in research. Tim Carey, principal investigator of PCORnet’s Mid-South partner network, and Keith Marsolo, a member of the PCORnet Data Committee, presented information on other important PCORnet resources: the PCORnet Front Door, Collaborative Research Groups, the data curation process, and the Common Data Model.
The third panel discussion looked at examples of recently launched projects that are using PCORnet resources. Thomas Carton, principal investigator of the REACHnet partner network; Sara Loud, an investigator with the iConquerMS partner network; and Betsy Shenkman, principal investigator of the OneFlorida partner network, each described the experience of using PCORnet to achieve three very different aims. Carton leveraged a Collaborative Research Group to form partnerships between researchers and the Center for Disease Control and Prevention (CDC) in order to quickly develop a study proposal on curbing opioid use, while Loud shared how her team used PCORnet to quickly identify 11 sites to collaborate on a proposal for a multiple sclerosis study. Finally, Shenkman discussed how her team used the Front Door to identify potential participants for a project about hypertension.
PCORnet Plenaries and Posters
It wasn’t only during the workshop but also throughout the Annual Meeting that PCORnet leaders participated in panel discussions. Sharon Terry, co-principal investigator of the PCORnet Coordinating Center and chair of the Engagement Committee, and Stephanie Buxhoeveden, an Engagement Committee member in the iConquerMS partner network, participated in a panel discussion on giving people access to research results that matter. Both panelists stressed that patients should receive data collected during clinical studies, including their own individual patient data and full research results from the study.
PCORI’s Take on the
Wondering what PCORI thought of the Annual Meeting? Check out Executive Director Joe Selby’s blog, where he shares the moments he found most inspiring!
Poster sessions throughout the Annual Meeting also featured PCORnet work. Posters highlighted study results, as well as lessons learned from PCORnet partner networks related to topics such as community building, data linkage, and stakeholder engagement.
If you were unable to attend the PCORI Annual Meeting in person, you can watch archived webcasts of plenary and breakout sessions. Interested in PCORnet activities at the Annual Meeting? You can access presenters’ slides from the PCORnet in Action Workshop and the PCORnet posters .
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.