Patient-Generated Data and Comparative Effectiveness Research


July 9, 2014

Researchers at Duke Medicine published an article in the July 2014 issue of Health Affairs that assesses the need for, uses of, and strengths and weaknesses of patient-generated data and reviews efforts to create new streams of patient-generated data for clinical and research use. The authors discuss patient-facing technologies, such as wearable sensors and other devices that collect patient-reported outcomes (PROs), and explore ways that these technologies could potentially help inform decisions made by patients, providers, and policy makers and ultimately improve the quality of patient care.

Click here for the article: Assessing the Value of Patient-Generated Data to Comparative Effectiveness Research.

Amy Abernethy and Tracie Locklear, two of the paper’s authors, are also members of the NIH Collaboratory’s Patient-Reported Outcomes (PRO) Core Working Group. Click here to see their Living Textbook chapter on PROs.


The Diane Rehm Show Features PCORnet


On Thursday, April 17, The Diane Rehm Show, a nationally syndicated news and call-in program carried on National Public Radio, aired a program titled The Promise and Perils of a New Project to Share Individual Patient Records. Susan Page of USA Today led the discussion on PCORnet: the National Patient-Centered Clinical Research Network, which is supported by the Patient-Centered Outcomes Research Institute (PCORI). Dr. Joe Selby, the executive director of PCORI, describes how PCORnet will take advantage of the incredible quantity of clinical information in electronic health records to conduct much-needed research on the relative effectiveness of different medical devices, drugs, and other medical therapies. Click here for a transcript of this program, or listen to the full episode below:

Listen now: The Promise and Perils of a New Project to Share Patient Records


Stanford Launches Meta-Research Innovation Center


The Meta-Research Innovation Center at Stanford (METRICS) is a new research-to-action center that will conduct meta-research or “research on research” with the goal of optimizing the reproducibility, efficiency, and quality of scientific investigations. Funded by a grant from the Laura and John Arnold Foundation, its efforts will apply to all scientific research, not just medical research.

METRICS is co-directed by John P.A. Ioannidis, MD, DSc, and Steven N. Goodman, MD, MHS, PhD. The center will fund scholars in meta-research and foster worldwide collaborations “to study how research is done, how it can be done better, and how to effectively promote and incentivize the use of best scientific practices.” Additional details can be found on the Stanford School of Medicine website.


PCORI Featured in Health Affairs Blog


Joe Selby, MD, MPH, executive director of the Patient-Centered Outcomes Research Institute (PCORI), discusses the promise of PCORI’s research efforts in a recent guest blog post for healthcare policy journal Health Affairs. In his post, Selby explains that PCORI’s mandate is not just to fund comparative effectiveness research (CER) studies that compare multiple therapeutic options, but also to share the results in ways that are meaningful to patients, physicians, and other stakeholders.

Although many of PCORI’s resources are dedicated to supporting CER in reaPatient-Centered Outcomes Research Institute (PCORI) logol-world settings, patient engagement in research is also a cornerstone of PCORI’s efforts. Of the $464 million invested, 62% has been focused on CER, with the rest spread across infrastructure (18%), methods (11%) and communication and dissemination research (8%). PCORI expects to commit $1 billion over the next 2 years to expand their work. As part of their mission, they also hope to improve research methods and build the national capacity for CER.


Grand Rounds (3-26-2014): Why Is the FDA Interested in the Collaboratory and PCORnet?

Update:

Archived video and slides  from the March 26 Grand Rounds are now available on the NIH Collaboratory Grand Rounds webpage.

Photograph of FDA CDER Director Janet Woodcock, MD
CDER Director Janet Woodcock, MD. Photo credit: FDA

The guest speaker for this Friday’s Collaboratory/PCORnet Grand Rounds presentation will be the FDA’s Janet Woodcock, MD. Dr. Woodcock is the current director of the Center for Drug Evaluation and Research (CDER), the division of the FDA primarily responsible for evaluating the safety and effectiveness of both prescription and over-the-counter drugs and biologic therapies marketed in the United States.

The Grand Rounds presentation will take place from 1:00-2:00 PM Eastern time on Friday, March 26. Archived video and slide sets from the presentation will be available early the following week; links to archived material will be provided in an update to this post.


STOP CRC Study Featured on NPR Health Blog


The Strategies and Opportunities to Stop Colon Cancer in Priority Populations (STOP CRC) study was recently featured on National Public Radio’s Shots Blog, which is devoted to coverage and discussion of health and healthcare issues.

Picture of U.S. stop sign.
Public-domain image via Wikimedia Commons.

STOP CRC, which is exploring innovative approaches for increasing colon cancer screening rates among low-income and minority populations, is one of the seven UH2 pilot projects supported by the NIH Collaboratory. The demonstration phase of the project will be conducted within a pair of health centers that are part of OCHIN, a community-based network of Federally Qualified Health Centers.

More information about about STOP CRC is available here.