AUGUST 19, 2016 BY KATHLEEN M. MCTIGUE
Greetings from the PaTH Clinical Data Research Network (CDRN)! In the PaTH Finder, our new quarterly e-newsletter, we hope to share news across the many clinical researchers, patient partners, other stakeholders, informatics experts, and clinicians who make up the PaTH community. Many of you may be involved with, or aware of, only a limited portion of the PaTH activities. If so, we hope this newsletter will help you more fully grasp the scope of this project.
As you may be aware, the Patient-Centered Outcomes Research Institute (PCORI) has funded 13 CDRNs and 20 Patient-Powered Research Networks (PPRNs) to create the National Patient-Centered Clinical Research Network (PCORnet). Its goal is to make it faster, easier, and less costly to conduct clinical research.
Since early 2015, when PaTH was first funded in the first round of CDRNs that PCORI supported, a great deal has been accomplished by the PaTH Network. For example, real-world health data have been standardized across six health systems –in a format that is designed to help investigators answer research questions and is compatible with nation-wide data from across PCORnet (see Data Paths below).
We have developed innovative approaches to facilitate multi-site patient-centered outcomes research, including a novel patient-centered IRB pre-review (see Researcher Toolbox below). Patient partners’ perspectives on their experience of being ill and accessing the health care system have enriched PaTH researchers’ understanding of relevant research topics – and PaTH is actively developing novel approaches to help facilitate patient engagement in the studies that our network supports (see Patient Partner News below).
Health system leaders from across the participating health systems have contributed their unique insights into research priorities (see Happenings below), and we are seeking opportunities to find answers to the research questions they have raised. Likewise, PaTH has contributed to PCORnet governance at the national level, for example, through the work of Dr. Rachel Hess (initial PaTH Principal Investigator, now co-Principal Investigator and Utah Site PI for PaTH) with the PCORnet Data Committee. Perhaps most important, our diverse clinical investigators, patient partners, informatics experts, and many others have together become a community with a shared purpose.
We are proud to already support a range of clinical research studies addressing topics such as aspirin dosing in cardiovascular disease (see Study Spotlight below), outcomes related to bariatric surgery, prevention of fragility fracture, improved treatment of back pain, and the outcomes related to health policies around diabetes (see details on our website). PCORnet has recently carried out a rigorous evaluation of participating DataMarts to ensure they are ready for deployment. Most of PaTH’s sites have successfully completed this “data characterization” process to date and have begun to participate in data queries, along with the other CDRNs of PCORnet.
In the upcoming weeks, we anticipate multi-site collaboration opportunities to increasingly arise as PCORnet functions go live. As we prepare to support diverse research studies and plan to navigate the path ahead, this is an opportune time to reflect on the journey we have been on to date. We hope that this newsletter – and the new PaTH website – helps you to join us in that process. Please remember that our focus is on patient-centered research and that we are eager to learn from the perspectives of patients, clinicians, and other stakeholders, so feel free to share your own ideas for effectively moving forward by contacting PaTHCDRN@pitt.edu.«—- Back To News