Professor Bastiaan Bloem is the medical director and founder of the Parkinson’s Centre of Excellence in the Department of Neurology at Radboud University’s Nijmegen Medical Centre in the Netherlands. He was trained as a neurologist at Leiden University Medical Centre and received additional training as a movement disorders specialist during fellowships at The Parkinson’s Institute, Sunnyvale, California (with Dr J.W. Langston), and at the Institute of Neurology, Queen Square, London (with Prof. N.P. Quinn and Prof. J.C. Rothwell). He is also co-founder of ParkinsonNet, a network of healthcare professionals in the Netherlands that work together to provide better care for people with Parkinson’s disease based on the following model…
The following has been paraphrased from an interview with Prof. Bastiaan Bloem on December 13th, 2017.
(Click here for the full audio version, apologies for the even worse than normal audio quality in this one)
Your recent paper forecasts a global Parkinson’s pandemic, with a doubling of people with PD over the next two decades. Do you believe this is inevitable and what, if any, changes need to happen to prevent this?
First, the results were an extrapolation from previous studies and from a report by The Lancet’s Global Burden of Disease which showed an alarming increase in the number of Parkinson’s patients forecasted for the next one or two decades.
There is nothing available today that can slow down, let alone arrest, progression of the disease for people who already have it. If something did come along then we could also give it to people at risk for future development of PD. There are treatments that we have high hopes for, these include non-pharmacological interventions like exercise and diet as well as antibodies directed against the protein alpha-synuclein that misfolds in the brains of people with Parkinson’s. If they prove to be effective they could prevent the rise in numbers of this disease. We don’t have anything yet but there is a lot happening.
A question from Dr. Jon Stamford and Sara Riggare: ‘Asides from raising funds and lobbying, what role do you think patients should play in setting research agendas?’
I think patients should play a role in all stages of research. Patients and scientists should decide together on the research agenda and on what should take priority. They should also be jointly responsible for raising money and building protocols as many doctors and scientists build protocols that are simply not tolerable for patients. Then the patients should play a critical role in interpreting the data so we can assess what it means not only scientifically but in the lives of patients. Finally, the most crucial phase is the implementation of published research findings in clinical practice. What I see from scientists is that they are very interested in the science, but once their paper has been published they fly off like a butterfly to the next flower well before the previous flower has bloomed. The research findings should find their way into clinical practice and it is in this final implementation phase where I believe patients play a critical role.
What have been the most important lessons you have learned so far from the ParkinsonsNet program you spearheaded in the Netherlands? What advice would you give to people in other countries trying to implement something similar?
We founded ParkinsonNet for a number of reasons. I strongly believe that PD is way too complex to be handled by generalists alone. For example if you have gait problems you need to see an expert with a deep understanding of Parkinson’s and experience in that specific area to help you best. ParkinsonNet is a nationwide network that consists of a limited number of people who get on-going training based on the latest research, have high case loads, collaborate in a multidisciplinary team, and treat patients as their partner in healthcare. We now have data published in Lancet Neurology that shows that using specialized therapists that work in a network and who apply a patient-centered approach leads to better care, fewer complications, is cheaper, may actually saves lives and patients are happier.
For those looking to bring ParkinsonNet to their own area, I would recommend that they read the paper that we published in Lancet Neurology and the one that came out in Health Affairs. This is particularly for health insurers or governments. The reports showed that any investment made in ParkinsonNet is easily outweighed by the cost savings for society. We are happy to help anyone who wants to establish a ParkinsonNet in their area. In addition to what we have in the Netherlands we are also helping set up networks in California, Norway and Luxembourg. I’m hoping others will consider building it in their country.
Your new Personalized Parkinson’s Project(PPP) seems like it will be the most involved study of its kind, including molecular analyses, advanced brain imaging, and wearable devices to detect a wide range of vital signs. But do you worry that PPP does not go far enough?
This is a very intense study where we had active involvement of patients who thought about it with us to determine if it was too hefty. In it patients regularly give blood, genetic material, stool samples, cerebral spinal fluid, undergo an advanced neuro-imaging protocol and also use wearable sensors 24/7 for 2 years. The patients are actually telling us that they want this protocol because they want answers to this horrible disease. We feel that studies like this where you follow multiple domains for a lot of patients over a long period of time is really the way forward.
I am worried about two things. You need really large sample sets to understand the variations between patients. This was one of the goals of the study, trying to understand why some patients do better than others. To deliver a personalized approach we need a very large sample to get a feel for all the variations that are out there. Our project is well funded, but still we only have funding to follow 650 patients for three years and my worry is that this may not be large enough or long enough, hopefully we will get the funding to follow more patients for 10 or 20 years. But it is a good start, the patients are doing well and tolerating the protocol. Our data will be shared worldwide with scientists and I am hopeful that through all of this we will get answers but we are actively seeking funding to enlarge the cohort and increase the follow up.
It was also recently announced that a new Artificial Intelligence tool from Google called DeepVariant will also be used to help generate more accurate Genome analysis, how will this be integrated into the PPP?
Personalized medicine is often equated with pharmacogenomics(the study of how genes affect a person’s response to drugs) and I think it is a big component. One example is the drug Rasagaline, it works great in some patients and does nothing in others. We want to understand the genetic basis for these differences. Beginning to understand all the genetic determinants will help us understand which patients will benefit from which drugs. Yet personalized medicine requires more than just genetics, it also must incorporate behavioral responses and preferences so that ultimately we can base your personalized approach on a wider collection of different data points.
You’ve mentioned that you want to give physicians and neurologists access to all the data generated through PPP. With this information, how do you envision future visits to neurologists will look like for patients?
Me and a colleague recently submitted a paper and our opening line was ‘we could not have designed healthcare worse’. We ask patients with poor driving abilities to drive sometimes for hours to hospitals to sit in a waiting room for a long time to see their doctor for a 15 minute visit that doesn’t even reflect their behavior at home. It’s horrible. When my dream is ready, patients will be able to track themselves at home through self monitoring with questionnaires or wearable sensors, that information should be collected in a dashboard that the patient and a personalized case manager will monitor. Once patients begin to deviate from their projected path then they will get a virtual home visit. If that is not enough then a PD therapist will come to their home to see them in their own home environment. If that fails then maybe you would go to the hospital and see your neurologist. That’s a drastically different future that I think will allow us give us better care with a reduction in redundant care, travel time, and I’m sure will lead to happier and healthier patients.
You’re also quoted as saying in a piece by Jon Palfreman, “…there are 5 million Parkinson disease phenotypes(observable characteristics), corresponding to the 5 million people worldwide with Parkinson’s, each with their own individual profile”. Do you also believe that we will need 5 million different therapeutic strategies to properly manage this disease?
Yes that is the consequence of that statement and I still believe it is true. I’ve dedicated my life to Parkinson’s, my whole clinical and research career has been devoted to this disease. The more patients I see the more I am convinced that no two people are the same. From genetics to personal preferences to the spouse they have to the dog they care for, no two people are the same. So yes, five million patients deserve five million approaches.
You had some criticism of Randomized Control Trials in your recent paper. What would you replace them with?
The problem with clinical trials is that we tend to include the ideal patient: between 40-65, no co-morbidities or any other conditions, no cognitive impairments, living nearby the hospital, and able and willing to complete all the questionnaires. Whereas the folks I see in every day clinical practice have other conditions, are 83, have poor mobility, etc. The problem with clinical trials is that they poorly reflect daily life. Of course they have some advantages, I’m not saying we should get rid of randomized clinical trials, they do carefully control for all sorts of conditions.
We just came out with a paper in Lancet Neurology that was based on a medical claims database analysis, which includes people with co-morbidities, people of all ages and even those with unusual cases. Plus the follow ups in this data were much longer than a typical clinical trial. We included the results of 4,400 patients and data collected over 3 years. In contrast our largest study till today included just 600 patients over 6 months of follow up. So it was a much larger study with more real life observations and the data was very compelling. What we showed is that working with specialized physiotherapists that are part of the Dutch ParkinsonNet is more effective. Patients required fewer treatment sessions, had better outcomes, fewer fractures, fewer orthopedic injuries and fewer hospitalizations. The cost of care was also cheaper, partially because it was more effective requiring fewer treatment sessions, but also because of fewer complications. There was also a tendency towards a 3% reduction in deaths. And it was a cheap study, our biggest study so far was about 1.5 million dollars, this was done with around 20 or 30 thousand dollars because all we had to do was analyze the existing data.
For more information on ParkinsonNet or the work of Prof. Bastiaan Bloem see the references and their descriptions listed below.
Ypinga et al., The Lancet Neurology
This new article shows the added value of ParkinsonNet in daily clinical practice, and the paper was special both because of the interesting methodology and the exciting findings. The research was carried out at the initiative of a large Dutch insurer (named CZ). In their medical claims database, we identified a large group of representative patients with Parkinson’s (n=4,381 in total), with data spanning a long period of 3 years. This makes this new study one of the largest studies ever on Parkinson’s healthcare. Half of the patients were treated by a ParkinsonNet physiotherapist, the other half by a trained physical therapist (i.e. without special experience in Parkinson’s care). Both patient groups proved to be very similar. Treatment by ParkinsonNet therapists was associated with:
- Better care (fewer treatment sessions, better continuity of care).
- Less complications (significant decrease in fractures, other orthopaedic injuries, or pneumonia).
- 3% decrease in mortality (significant in the baseline data, just no longer significant after correction for baseline characteristics).
- Significant decrease in costs, with both a decrease in the direct physiotherapy costs and a decrease in total healthcare costs (560 euros per patient per year, which translates nationally into a cost saving of more than 11 million euros per year, and this for specialized physiotherapy only).
Parashos, Commentary The Lancet Neurology
This Commentary has been released simultaneously with our own publication, and is written by the internationally recognized Parkinson expert Prof. Sotirios Parashos. The paper shows a great deal of appreciation for the special methodology and the convincing results.
Bloem et al., Journal of Parkinson’s Disease
This article has been written together with a number of international experts in the field of Parkinson’s care and research, and deals extensively with the special research methodology based on analysing medical claims.
Bloem et al., Health Affairs (No. 1 journal in “medical politics”)
This article shows the positive business case of ParkinsonNet, showing that the costs of installing and maintaining a network are clearly outweighed by the much greater cost savings. This is particularly important in light of the great international interest in introducing the ParkinsonNet concept in other countries.
Dorsey & Bloem, JAMA Neurology (No. 3 journal in Clinical Neurology)
This article shows the enormous (and even alarming) worldwide increase in the number of Parkinson’s patients in the coming years. The incidence of Parkinson’s disease seems to increase faster than for any other neurodegenerative disease. This underlines once again the enormous relevance of the new research published in Lancet Neurology, and the need to provide optimal care to this fast-growing group.