Determining Paths of Research

October 23, 2012

As reported in this blog time and again, the Partnership to Fight Chronic Disease certainly understands and values the heavy burdens patients and providers alike have to take into consideration when vetting options for treating chronic disease.  It is for this reason PFCD supports the mission of the Patient-Centered Outcomes Research Initiative (PCORI), an organization that “is authorized by Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions.  PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.”

In an effort to expand the national dialogue about improving our health care system, PCORI is currently seeking public input on setting national research priorities and composing an overarching research agenda.  In fact, how those priorities are selected was the subject of an in depth blog last week on Health Affairs by PCORI’s Executive Director and a top PCORI scientist. While soliciting input from the public is surely a more time-consuming model for identifying research areas, PCORI notes that it “is necessary if we wish to avoid funding research that doesn’t find its way into practice.”  Given our ultimate mission of accelerating model programs to improve outcomes for those suffering from chronic disease, PFCD couldn’t agree more with this philosophy. 

PFCD strongly believes that one critical area for research characterized by both substantial needs and opportunities is how to enhance care for the millions of people coping with multiple chronic conditions within a medical system geared almost entirely around individual diseases.  More than 75 million Americans live with more than one chronic condition, such as arthritis, asthma, or depression.  One in 15 children is also affected.  Almost $2 out of $3 we spend on health care is directed toward care for the twenty-seven percent of Americans with multiple chronic conditions. 

Read PFCD's White Paper - Needs Great, Evidence Lacking for People with Multiple Chronic Conditions

Despite these sobering statistics, precious little research exists on effectively preventing and managing multiple chronic conditions.  This disconnect only furthers a systemic lack of coordination by focusing more on treating individual diseases than the helping patient as a whole.  The gaps in the evidence base for managing multiple chronic conditions leaves those patients, their families, caregivers, and health care providers to make critical health care decisions with insufficient information.

We commend PCORI for taking this initiative in asking for input from the public and feel such a model can have real impact in improving the system through patient-centered care.  Like PCORI, we share their desire to “bring the voice of patients, caregivers and other stakeholders to the process in new and critically important ways.”