I was very pleased to take part in the recent National Pharmaceutical Council (NPC) webinar discussing its fifth annual healthcare stakeholder survey gauging the importance of comparative clinical effectiveness research (CER) to NPC, its member organizations, and health care overall. I was particularly pleased to see PCORI named as a leader in the field, even as we acknowledge that we all have a lot of work yet to do if CER is to fulfill its promise in improving healthcare decision making and patient outcomes.
The survey found clear enthusiasm among researchers, policy makers, employers, business groups, insurers, and health plans for CER as a means of improving health and health care. These stakeholders were also optimistic about CER’s potential near-term impact, although few reported that they had yet seen an influence on decision making.
PCORI was the predominant choice among this year’s survey respondents when asked which organizations play leading roles in CER. Information from the survey and additional feedback from the broader healthcare community, including patients, caregivers, and clinicians, guides us as we navigate the challenges of building a portfolio of high-quality, useful patient-centered CER studies.
The survey is a key indicator of how an important segment of the broad healthcare community views CER and the organizations that fund and perform it. More than 100 respondents provided their perspectives on the research landscape. This year, 92 percent of respondents called CER “very” or “somewhat” important. This feeling persisted even though 82 percent said CER had no effect or only led to a slight improvement in healthcare decision making in the past year. However, the great majority of respondents expected CER to influence such decisions within three to five years.
Recognized Leadership
According to the survey, over the past four years, PCORI has become a leader in many areas of CER. The survey report notes that we have been particularly active funding research studies, maintaining open and robust dialog with stakeholders, and developing a clinical data infrastructure to enable research to be conducted faster and more efficiently. This highly visible work has strengthened the healthcare community’s perception of our role in most aspects of CER.
One area where our activity is well-recognized is in setting CER priorities. Seventy-five percent of respondents said we played a key role in this area, while 63 percent recognized that role for the National Institutes of Health (NIH) and 62 percent for the Agency for Healthcare Research and Quality (AHRQ). The survey results also reflect our growing portfolio of research projects. Eighty-one percent of respondents said they expect us to play a significant role in funding and monitoring CER in the next five years, up from 76 percent last year and 44 percent in 2011. Our role is likely to grow further as our research funding increases, accompanied by intensive portfolio management to ensure valuable returns for patients and other healthcare stakeholders.
PCORI’s broad mandate includes the establishment of generally accepted methods standards for CER, and survey respondents clearly recognized this work. Seventy-seven percent said PCORI has a leadership role in setting research standards, followed by AHRQ, academia, and NIH. In the first survey, in 2011, only 50 percent saw us as a leader in establishing research standards. We can credit much of this progress to the PCORI Methodology Report, its incorporated standards, our commitment to seeing all of our funded projects meet those standards, and the ongoing work of our Methodology Committee.
Challenges that Remain
For all the progress being made on the CER front, through our work and that of many other funders and esteemed stakeholder colleagues and partners, the survey results also remind us that much work remains. Ensuring that research does a better job of addressing the real-world questions patients and their clinicians face has been a long-term challenge for the healthcare community. For example, only 41 percent of the NPC survey respondents agreed that current research priorities adequately address treatment choices faced by patients. Still, this is better than the previous two years.
In truly patient-centered research, investigators include outcomes that patients have identified as important to them. However, 58 percent of respondents said that assessments of treatments remain narrowly focused on clinical effectiveness, rather than taking into account such factors as quality of life and workplace productivity.
The findings also indicate that, in physicians’ offices, clinics, and hospitals across the country, patients still face questions for which no evidence-based answers are available. As they did last year, about half of respondents see an opportunity to use real-world evidence more widely in helping patients make care choices. This result underlines the need for work, like the studies we fund, that places a priority on producing evidence to inform the practical decisions confronting patients and those who care for them.
Next Steps for the Research that We Fund
As our research portfolio begins to yield findings, we’ll expand our efforts to broadly disseminate that evidence so it can make its way into practice. NPC survey respondents appropriately most often saw AHRQ as having a significant role in translating and disseminating research in the next five years, followed by PCORI. As outlined in our authorizing legislation, we’ll be partnering closely with AHRQ to share the information our studies produce.
We at PCORI also assess different communities’ knowledge of and attitudes toward health research, CER, and stakeholder engagement in research. We have surveyed researchers, patients, caregivers, and clinicians. Results of these surveys, which will be available soon, will inform us about barriers to, and facilitators of, CER and engagement in research.
For me and our staff, Board of Governors, and Methodology Committee, the survey findings were a rewarding reflection of our progress. We look forward to continuing our work with all of our stakeholders and will look to future surveys for feedback on our progress.
