By: Zoltan Mari, MD
Johns Hopkins Parkinson's Disease and Movement Disorders Center
Parkinson disease (PD) affects millions of people worldwide. With no cure and no effective ways to prevent it, PD is a huge public health challenge, especially as we increasingly expect to remain healthy later in our lives. The National Parkinson Foundation (NPF) is an international organization dedicated to helping PD patients’ lives through promoting research, improving care, and increasing access to expert care. The NPF Centers of Excellence (COE) are highly specialized PD centers who meet NPF’s stringent center criteria for delivering the utmost level of academic and clinical care.
The NPF COEs regularly gather together to discuss their experiences. This process resulted in many important breakthroughs in care. In 2008, NPF and the centers decided to help better inform those discussions by systematically collecting information about patients seen in each center and the impact of PD on their lives and health and then using these data to better understand and improve the care that patients receive.
At the beginning of this process, most PD specialists felt like the care they delivered was fairly similar to the care received by patients seen at any COE. As we look at the results, it is clear that patients are receiving great care across the COE network. However, how patients receive that care is different – and understanding those differences and how they impact the patient experience is helping us to do better. Atul Gawande wrote in the New Yorker, “It used to be assumed that differences among hospitals or doctors in a particular specialty were generally insignificant, but the evidence has begun to indicate otherwise.... The truth is that we have had no reliable evidence about whether we’re as good as we think we are.” Our experience bears this out: we’re seeing that, for example, every center manages depression a little bit differently. How soon should we intervene? What mix of medication and counseling? Without tracking who is using which approach and the results, it is hard to understand which approach works best.
We call this program the NPF Quality Improvement Initiative (QII), and it is bringing science to understanding things about how we care for PD that we used to has initially aimed to better understand these differences by detailed and prospective data collecting of many clinically relevant aspects of care, in a formal, scientific way.
This approach is hoped will have a far-reaching impact on PD care by showing how what we do to treat PD results in improvements for patients with it. We believe that the QII program will help us to bring together the best thinking from all the different approaches taken by specialists, and not only will this help neurologists bring together the best ideas from across the centers, but we will share our findings with everyone who cares for PD.
When patients get better care, they are more able to benefit from advances in science. For example, when we learn how to slow PD progression, we will still have to deal with side effects and symptoms caused by or related to treatment. When someone introduces a drug or treatment that slows PD progression, it would be even more important to do everything else right, because people will expect to live a normal life longer and will need more help managing the symptoms they do have.
Overall care is very complicated because it requires considering the age of patients, their stage of the disease, the multiple medications used to manage it, their social support situation, and any other health issues. Still, learning what represents best care for every patient, including so much more than just one pill or another, is the key goal of QII.
Such approach is part of a rather novel, rapidly growing field in medicine. When evaluating a new drug, doctors run clinical trials, where the drug is tested against a sugar pill in relatively healthy people who are carefully selected to ensure that nothing but the effect of the drug in the test will affect the results. In other words, often we don’t know whether a drug that works in a clinical trial will work as well in the diverse group of patients we see in our clinics.
The beauty of QII is that we study all PD patients and rather than just the ones who fit a narrow set of criteria. It is all inclusive. Every patient, with all their various health issues, problems, and their multiple medications, is important for this research. We can learn something important about their PD and PD care from every single patient.
Because we do not really have any “exclusion criteria” and only ask that patient have PD, we invite all PD patients to consider participation in QII. That way every PD patient will have the opportunity to help us advance the science of PD with virtually no risk to themselves.
Participation does not impose any health risks, no experimental medications or interventions are involved, and no diverting from usual best clinical practice is required. In fact, patients will receive their usual care, just as they otherwise would, with a few additional forms to collect data. The information collected actually informs doctors about a patient’s status in a more standardized and detailed manner than what their usual care otherwise does. Therefore, not only there appears to be no medical risks with enrolling, in some ways, there may even be some medical benefits directly to the individual patient. Of course, the greater benefit is going to be the acquired information from all the registry data, which has the potential of helping millions of current and future patients with Parkinson disease.
The risks of enrolling in the registry are not medical but related to privacy. In order to ensure integrity and accuracy of data, all datasets need to be properly identified. However, extensive safety measures are taken to prevent any unauthorized people from accessing patient’s private information. Your investigator at the NPF COE will explain more about these measures and all risks and benefits.
We greet the NPF’s wonderful, ambitious Quality Improvement Initiative, which offers the entire PD community a grand, novel approach to improve care in PD patients. We are very excited to be part of this major effort and we invite you to learn even more.
Zoltan Mari, MD, is the Medical Director of the NPF Center of Excellence at Johns Hopkins Parkinson's Disease and Movement Disorders Center.