Morning Zen Guest Blogger – Elaine Slaton

Comparative Effectiveness Research (CER) – research designed to aide stakeholders’ decisions; research that can identify what should work best for us as unique individuals to achieve the health outcomes we want; and research that is supposed to be patient-centered – isn’t quite doing it for us. That is, at least, not yet.

In the U.S. this form of research has largely failed to include the priorities of those referenced in the literature as patients, consumers, and families/caregivers. Note the findings of a 2012 survey of funded CER studies conducted by Avalere. “NONE [of the studies surveyed] indicated that patients were specifically involved in the research proposal or generation of research questions or otherwise involved in the conduct of the study apart from being research subjects.” Indeed, it seems that for the past 3 decades CER in the United States has failed to be patient-centered and has served only the interests of a very small number of stakeholder groups.

Now, however, CER funding is on the rise and carries with it great promise to our health care reform. The 2009 Recovery and Reinvestment Act dedicated $1.1 Billion to CER. But, the most exciting possibilities arrived with the enactment of the Patient Protection and Affordable Care Act (ACA) in 2010. As Tony Coelho, Chairman of the Partnership to Improve Patient Care, noted in his remarks at the 2^nd Annual Achieving Patient-Centeredness in CER Forum (September 28, 2011) the ACA awarded primary stakeholders (they are patients in his world; children, youth and families in ours) a “direct and meaningful role in setting research priorities, overseeing the research program, and communicating study results.” Indeed, the ACA established the Patient-Centered Outcomes Research Institute (PCORI).

Language is powerful and in the naming of PCORI signals immense possibility. There are two terms used interchangeably for the kind of research we are talking about here: CER and patient-centered outcomes research. During the above-mentioned Forum, Joe Selby, Executive Director of PCORI talked about the intention highlighted by the use of the second term. He repeatedly emphasized that the research funded by PCORI would be patient-centered research and that PCORI would engage patients to understand their priorities. 

Further, consider the implications for family involvement embedded in the language of PCORI’s mission statement. PCORI helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community.

“Guided by patients, caregivers, and the broader health care community” is language key to our concern about family voice. Those words are given more life in the Research Agenda (pdf) released by PCORI in May 2012. The CMH Network has previously shared that report and the inclusive process behind its development. The features of this Research Agenda (page 21) include “promoting patients and their caregivers and key stakeholders in implementation settings as partners with explicit roles in the design, governance, review and dissemination of research”.

And, there is more language emphasizing PCORI’s intent. In his June 5^th comments in the Executive Director’s Corner of PCORI’s website, Dr. Selby expressed hope that their first funding announcement released May 22^nd would “launch nothing less than a new era in health and healthcare research.” Even more clearly, he expressed hope that “we’ll see patients and other stakeholders coming together with researchers to form teams that have not worked together before.”

CER or patient-centered outcomes research is but one of many research forms with the power to influence the future of children and youth with mental health issues and their families. It seems PCORI has issued a pretty clear invitation to us.

Look again at Avalere’s 2012 survey. What can we do to ensure findings of such a survey in the future might show that child, youth and their families are directly involved in research proposals, identifying research priorities, or are filling essential roles other than just being research subjects? Are we really serious about being family-driven and youth-guided?

~ Alice “Elaine” Slaton ~ Advocating inclusiveness and transparency, Elaine trains diverse stakeholders to fully engage in research and evaluation projects.