Every year, the United States collectively spends about $3.5 trillion on low-value care, and Comparative Effectiveness Research (CER) aims to combat this by determining what kinds of care are the most effective and efficient for patients. CER is conducted through the Patient-Centered Outcomes Research Institute (PCORI) and includes not only clinical care research, but also interventions that innovate healthcare delivery and financing, or that target public health in the community, including those intended to affect awareness, lifestyle, or environmental exposures.
The first panel was an update from the hill, mostly concerning the fact that the original authorization for PCORI expires this year and it will need to be reauthorized for CER to continue. We heard from Legislative Assistant Maura Fitzsimons and Senate Health Policy Adviser Alyssa Penna on their perspectives on the future of PCORI. They noted that PCORI has fairly broad support and there are Medicare and Medicaid packages that the reauthorization will likely be attached to. The Senate is trying to work on their PCORI reauthorization language from a bipartisan perspective. The House is also interested in working on reauthorization but are not as far along in the process of soliciting stakeholders and drafting a bill.
The Senate has been doing work to solicit stakeholders and find out if they are supportive of reauthorization. Patient groups are very supportive and see the value in the continuation of this type of research. PCORI research is unique in its patient-centeredness which has been a welcomed change for patient groups. They recognize that sustainable funding is needed for multi-year projects to continue. The health plans are also supportive, but they have provided some feedback on changes they would like to see.
The discussion around PCORI reauthorization is part of a larger conversation about how we should be spending our healthcare dollars. Much of the research currently being done by PCORI is very disease-specific and only 3-4 percent of their budget goes towards dissemination and implementation, so it may be beneficial to see some reallocation of their funding in the reauthorization bill. No firm decisions have been made around exactly what language will be included in the bill, but there has been some discussion about addressing more high-value care research and funding more dissemination. After 10 years of research, there have been some important findings published by PCORI, but they cannot effect change without being communicated to patients and clinicians.
The second panel features researchers and patient representatives to discuss how CER is conducted. The first example was about a tool developed to communicate treatment options to patients presenting with chest pain. Often in this situation, the patient is admitted to the hospital without being given the option to go home. There are many scenarios in which patients are often not aware of decisions being made on their behalf. Dr. Erik Hess and Dr. Pat Dunn discussed the tool they developed to help patients make this decision for themselves. It describes their current condition, risk factors, and the options available to them. It was tested at 6 locations with 868 patients. The patients who used the tool were found to be more knowledgeable about their condition, were twice as engaged in their care, experienced no adverse effects, and resulted in 15 percent fewer hospitalizations. They are now working on disseminating and implementing this tool more broadly.
Next Dr. Kathleen McTigue and Neely Williams discussed their work on comparing bariatric surgery options. They used PCORNet data to conduct their research, enabling them to gather data from 46,000 patients and 45 health systems. The role of the patient investigator was to determine how to get more patients involved in the research process. There is a need for a partnership between patients, payors, and clinicians because they all share the common goal of improving the nation’s health. They discussed the importance of shared decision-making noting that because patients can sometimes get conflicting advice from different physicians and it can be difficult for them to discern what treatment option is best without the right resources. Tools help patients to understand their options and allow them to participate in the decision-making. This will result in collaborative decisions that include the perspectives of the patient, the primary care provider, and the surgeon.
The third panel included Dr. John Bulger, Dr. John Cuddeback, and Dr. David Kelley, focusing on the clinical direction and system impact of CER. A case study focused on dissemination found that it takes 17 years for research findings to be adopted into medical practice. It is increasingly important to build consensus and address the whole team in order to shorten the time of uptake for important new findings. Part of this will also include having appropriate access to the necessary data, which means data transparency and interoperability. Integrating shared decision-making tools into electronic health records (EHR) will help make clinicians more likely to use them. It will also include aligning incentives for the payors, the hospitals, and the patients.
Overall, these research teams found that shared decision-making and care coordination were extremely important for making patients more activated and engaged, increasing their knowledge about their conditions, and improving outcomes. Disseminating these research findings in a way that is accessible to patients is vitally important if they are going to effect change.