Living Up to Its Name? The Role of Patient-Centered Research
Anyone who has ever received bad news from his or her health care provider or held a loved one’s hand when a diagnosis was delivered can understand the importance of pinpointing the most effective treatment options. But the very people coping with serious conditions or caring for a patient often have the least time to track and weigh in on the comparative effectiveness conversation. Managing medical appointments, filling prescriptions, researching treatment options and filing insurance claims can feel like another full-time job, on top of work and family commitments.
Given the multitude of obligations that patients and caregivers face, it is up to the leading voices in the CER conversation to ensure those health needs are always top of mind. Without considering patient perspectives, we cannot be certain that up to $500 million a year in CER studies being funded by the Patient-Centered Outcomes Research Institute (PCORI) will yield the information patients, caregivers and health care providers need to navigate critical medical decisions. With the 2012 election behind us, few barriers remain to the Affordable Care Act. As a result, CER investment can be expected to grow in the years to come. Insights from “end-users” can help ensure research results are put into practice instead of relegated to a shelf.
We’ve seen firsthand PCORI’s efforts to draw patient voices into the discussion. This fall, PCORI launched a website where members of the public can share pressing questions on the medical conditions and treatments that matter most. Beyond digital outreach, PCORI also is bringing patients and their advocates to the table to discuss their needs face to face. PCORI is in the midst of hosting a series of patient engagement workshops designed to elicit topics worthy of further research. Each event had at least 25 percent of the seats set aside for patients, caregivers and advocates, and PCORI picked up travel costs to make attendance affordable for key participants. The first session even took place on a weekend to make it as convenient as possible for patients and caregivers to join the discussion.
Although PCORI’s web portal and engagement workshops are a good start, policymakers need to maintain the focus on meeting patient needs and improving outcomes. With patients in mind, the National Pharmaceutical Council (NPC) is concentrating on some of CER’s thorny issues that could create unintended consequences. Our goal is to ensure CER efforts achieve maximum potential without misfiring.
While we know patients are hungry for information about what treatments work best for specific conditions, the demand for assessments needs to be balanced with the understanding that every person is unique and may respond to a given treatment differently. Rather than viewing CER as a simplistic “red pill vs. blue pill” equation, we need to remember the reality may look more like “red pill for most, blue pill for other individuals.” If we’re successful in this aspect, we will see assessments that are rooted in the real world and take into account biological variations, socio-economic factors and patient preferences when navigating decisions around treatment options. Whether the choice is among medications, surgery, medical devices, lifestyle changes or other treatment approaches, CER done right will reflect the variability inherent in treating individuals rather than populations.
To give stakeholders an opportunity to delve into these issues, NPC, the National Health Council, WellPoint and 17 diverse cosponsors are holding a conference to assess the ways patient differences affect clinical outcomes and policy. Dr. Joe Selby, executive director, PCORI, and Dr. Patrick Conway, chief medical officer, Centers for Medicare & Medicaid Services, will be among the featured speakers at “The Myth of Average: Why Individual Patient Differences Matter” on Friday, Nov. 30 at the Omni Shoreham hotel in Washington, DC. Advocates from the COSHAR Foundation and Friends of Cancer Research will be among those weighing in with the patient perspective.
The conference comes on the heels of the Health Affairs briefing examining the challenges of implementing CER, including the communications landscape. While digital advances have opened the door for payers, health care providers and other stakeholders to share CER findings widely online, restrictive regulations prevent pharmaceutical companies from correcting misleading or erroneous information. Leveling the playing field would help ensure patients, caregivers and health care providers are basing their health care decisions on the most comprehensive, accurate, up-to-date CER data. This is likely to be a hot topic of conversation as we head into 2013.
Whatever course the CER discussion takes, it will be crucial to ensure patients are at the forefront as it continues to unfold. As we track the evolution of CER and health care reform, NPC is committed to keeping the spotlight squarely on the issues most likely to have an impact on patients.