As a physician, I know the challenge of helping patients determine which health care options might work best for them given their personal situation and preferences.
Too often they — and their clinicians — must make choices about preventing, diagnosing and treating diseases and health conditions without adequate information. The Patient-Centered Outcomes Research Institute (PCORI) was created to help solve this problem — to help patients and those who care for them make better-informed health decisions.
Established by Congress through the Patient Protection and Affordable Care Act as an independent research institute, PCORI is designed to answer real-world questions about what works best for patients based on their particular circumstances and concerns. We do this primarily by funding comparative clinical effectiveness research (CER), studies that compare multiple care options.
But more research by itself won’t improve clinical decision-making. Patients and those who care for them must be able to easily find relevant evidence they can trust. That’s why our mandate is not just to fund high-quality CER and evidence synthesis but to share the results in ways that are meaningful to patients, clinicians and others.
We’re also charged with improving the methods used in conducting those studies and enhancing our nation’s capacity to do such research.
We will be evaluated ultimately on whether the research we fund can change clinical practice and help reduce the variations and disparities that stand between patients and better outcomes. We’re confident that the work we’re funding brings us and the audiences we serve closer to that goal.
Recently, some questions have been raised in health policy circles about our holistic approach to PCORI’s work. That view holds that direct comparisons of health care options — especially those involving high-priced interventions — should be the dominant if not sole focus of PCORI’s research funding approach as a path to limiting the use of expensive, less-effective options.
We agree that discovering new knowledge on how therapies compare with one another is a critical mandate of PCORI and is essential to improving the quality and effectiveness of care. However, ensuring that patients and those who care for them have timely access to and can use this knowledge, so that they can effectively apply it to improve their decisions, is also very important.
Patient-centered care and patient engagement have become central to the vision of a high value health delivery system. The delivery system is evolving from a fee-for-service transactional payment model to a value-based purchasing model using outcome data and quality improvement and attainment. The Centers of Medicare and Medicaid Services (CMS) and private payers have spurred delivery redesign of networks that focuses on a set of clinical quality measures and patient care experiences along with efficiency measures.
However, the questions we ultimately really care are: “Did I get better? Am I healthier?”
With the advent of Facebook, PatientsLikeMe® and Avado, consumers and patients are sharing their healthcare experiences openly with their support system and strangers with similar illnesses. Our delivery system has yet to leverage the power of patient/consumer reported data in feeding back to care deliverers in the quality improvement cycle.
Clinical quality measures have traditionally consisted of process or surrogate measures and centered on providers and hospitals. As we move toward a system based on value, the measurement system must shift as well. Part of this movement will be utilizing outcomes directly reported from patients and their caretakers and incorporating these outcomes into quality improvement initiatives and payment models. The widespread adoption of standardized and validated patient-reported outcomes measures (PROMs) would accelerate the development of a patient-centered health system. However, new standards; patient-friendly, digitally-enabled instruments; secure portals; and more research will be required to facilitate adoption.
One major challenge for the new Patient Centered Outcomes Research Institute (PCORI) is to make good on its stated mission to improve health care by producing evidence “that comes from research guided by patients, caregivers and the broader health care community.”
In order to “guide” that research, patients will offer their time and their experience to serve on various panels alongside scientists and other stakeholders, many of whom have competing agendas. This means that representing the patient perspective in research governance, priority-setting, design, execution and dissemination is not a good task for the shy or the ill-prepared. Not only do you have to have reflected on your own experience as a patient, but you have to have a good sense of how much you can generalize from that experience. This is, after all, not about you. It is about us – all of us patients.
Sometimes this means gathering information from others who have a similar diagnosis and who have been treated with similar approaches. What was getting chemotherapy for breast cancer like for you?
Sometimes it means learning about how people with different kinds of heart conditions or kinds of cancer experience their diagnoses and treatments or health care in general. What happened when you were discharged from the hospital?