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We at PCORI view the patient-centered comparative effectiveness research (CER) we fund as critical for improving the quality of patient care. But what does the rest of the healthcare community think of CER and of engaging patients and clinicians in the research process?  We surveyed patients, caregivers, and primary-care clinicians in an effort to find out.

The survey serves two important purposes. First, understanding patient, caregiver, and clinician attitudes and practices regarding CER can help inform not only the kinds of research we might support, but also how we can help bring important information obtained from PCORI-funded projects to those who need it. Second, the more information we have about how patients, caregivers, and clinicians value research and their views on how we can promote engagement in research, the more focused our efforts to encourage rigorous, patient-centered research.

We released our survey results during a July 9 webinar that also featured a panel of healthcare experts: Marc M. Boutin, Executive Vice President of the National Health Council; Barbara J. Doty, MD, FAAFP, Director of the American Academy of Family Physician; and Susan Rawlins, RN, WHNP-BC, Director of Education of the National Association of Nurse Practitioners in Women’s Health. The panelists offered their perspectives on the survey findings and answered questions from the webinar audience.

Survey Results: The Value of Research

The physicians, nurse practitioners, nurses, and physician assistants surveyed showed strong support for clinical research. About three in four agreed CER can improve the quality of patient care, and most also agreed that CER should be used to develop clinical-practice guidelines. In the survey, we defined CER as research comparing the effectiveness and safety of preventive, diagnostic, and treatment options to produce evidence that is useful for making informed decisions in real-world clinical settings. “The concept of evidence being provided as comparative data at the point of care is very valuable and has been used in primary care for quite some time,” Doty said during the webinar.

It was interesting to learn that only 22 percent of the surveyed clinicians reported they were moderately or very familiar with the term comparative effectiveness research before the definition was explained.  “The term CER itself is not well understood,” Doty noted.

More than 70 percent of the patients, caregivers, and clinicians surveyed agreed that health research helps patients make better treatment decisions. Almost 90 percent of each group endorsed the importance of research that measures what patients care about, such as level of daily functioning.

The panelists offered several examples of the importance of patient preference. For instance, Doty said that as newly diagnosed breast cancer patients weigh their treatment options, they want to know not just survival rates but also immediate personal costs, such as whether radiation will affect their ability to work. Boutin added that CER can provide information about many aspects of treatment.

Turning Evidence into Clinical Practice

Despite the widely held view that evidence from CER can be an important tool for patients and those who care for them, clinicians reported uneven use of CER findings to inform patients of their options. For instance, about a third of the physicians said they had rarely or never used CER in the past 12 months while discussing screening recommendations with their patients; the percentage was similar for chronic disease management. Nurses and physician assistants generally used CER slightly more often.

To help identify ways to make important research results accessible, we plan to explore the reasons for the gap between valuing and using CER.  Possible explanations include a lack of infrastructure for making CER readily available when it’s needed, along with clinicians’ tight schedules not allowing time to thoroughly review CER studies. It is important that we at PCORI help clinicians use CER results appropriately because physicians are seen by many patients as the gatekeepers of reliable evidence. In the survey, patients reported that their doctors are the most trusted source of health information.

The survey results also point to the importance of making findings of PCORI-funded studies easily accessed on the Internet, which both clinicians and patients frequently use to find information on diagnosis and treatment.

Patients and Clinicians as Research Partners

One of our key goals at PCORI is to engage patients, clinicians, and other stakeholders in the research process—having them join with researchers to identify important questions to answer and important outcomes to measure. We believe doing so can improve the relevance of research findings and accelerate understanding and use of those findings in clinical practice. As panelist Rawlins noted, “Health care is becoming more of a partnership.”Most survey respondents agreed as well: 83 percent of patients, 81 percent of caregivers, and 72 percent of clinicians either somewhat or strongly agreed that if they or their peers worked with researchers to plan and conduct studies, it would enhance the value of medical research. But according to the survey, not everyone is eager to serve as a planning partner in the research process.

While nearly 70 percent of patients indicated an interest in such participation, that number dropped to 58 percent for caregivers and 55 percent for clinicians. Lack of time was the reason selected most often by respondents of all types as a barrier to research engagement. The results bring a challenge for PCORI-funded researchers into sharp focus: creating engagement opportunities that allow for meaningful input while being mindful of the time commitment of those who are not primarily researchers. The majority of both patients and clinicians noted that payment would facilitate their participation.

A Solid Foundation for Future Work

We are encouraged by many of the survey results. Most notably, the widespread belief in the value of CER gives us a solid foundation to our efforts to include the healthcare community in our research process and disseminate our work to a receptive audience. Our thanks to those who participated in the survey and listened in to the webinar.

Your continued interest is vital to our success as a patient-centered research organization. Visit the Get Involved section of our website to find out some of the ways you can help guide our work. And to stay up to date on all of our initiatives, sign up for our e-mail list.

We used existing opt-in survey panels accessed through In-Crowd

Fielding the survey

How were the participants located?

We used existing opt-in survey panels accessed through In-Crowd

How were participants invited?

We e-mailed survey invitations to a random sample of InCrowd registrants who met study inclusion criteria according to previously collected profile information. We continued to send out invitations until we met our recruitment goals.

How did participants access the survey?

They had online access.

How many questions were in the survey?

There were 16 questions for patients, physicians, and other clinicians, and 17 questions for caregivers.

When was the survey fielded?

December 2012 to January 2013

The participants

How many participants responded to the survey?

900 patients, 100 caregivers, and 750 primary-care clinicians

What types of medical conditions did the patients have?

Of the patients participating, 80 percent have a chronic disease and 20 percent have a rare disease

What proportion of the participating patients spoke Spanish primarily?

Eleven percent of the patients chose to complete the survey in Spanish.

For whom did the caregivers report making health decisions?

Of the caregivers, 53 percent made decisions for their parent, 18 percent for their spouse, 15 percent for their child, 17 percent for another family member, and 6 percent for a friend or coworker.

What was the source of the questions about perceptions of CER and engagement in research?

We developed those items for this survey and are currently continuing item development.

What were the healthcare roles of the primary care clinicians?

Of the clinicians, 53 percent were physicians, 27 percent were nurse practitioners, 12 percent were nurses, and 8 percent were physician assistants. 

Forsythe is a Program Officer in PCORI’s Research Integration and Evaluation program
rank is Director of PCORI’s Research Integration and Evaluation program

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