Abernethy and Colleagues Use New Technologies to Increase Patient Participation and Data Collection in Research

The work of Amy Abernethy, MD, PhD, Lynn Howie, MD, MA, Bradford Hirsch, MD, MBA, and Tracie Locklear, PhD is featured in the July 2014 issue of Health Affairs. The article, titled “Assessing The Value Of Patient-Generated Data To Comparative Effectiveness Research” outlines a new paradigm for health research, comparative effectiveness studies designed to assess which therapies work best in routine clinical practice. The abstract is included below; more information can be found on the DCRI website.


The goal of comparative effectiveness research is to assess medical therapies and allow patients, health care providers, payers, and policy makers to make evidence-based decisions about the most appropriate therapies in routine clinical practice. To conduct this type of research and to inform health care delivery, data about the impact of interventions on patient outcomes are needed. Methods of generating evidence for comparative effectiveness research provide opportunities to engage patients and understand their experiences with illness and its treatment. In this article we assess the need for, uses of, and strengths and weaknesses of patient-generated data. We also review in brief federal and medical society efforts to create new streams of patient-generated data for clinical and research use. We observe that the key to high-quality patient-generated data is to have immediate and actionable data so that patients experience the importance of the data for their own care as well as research purposes. We conclude that leveraging the emerging wealth of “big data” being generated by patient-facing technologies such as systems to collect patient-reported outcomes data and patient-worn sensors is critical to developing the evidence base that informs decisions made by patients, providers, and policy makers in pursuit of high-value medical care.