Bas Bloem, MD, PhD, a neurologist at Radboud University Medical Center, Nijmegen, the Netherlands, is co-founder and medical director of ParkinsonNet, an innovative collective of 64 professional networks across the Netherlands dedicated to improving care for Parkinson’s disease patients.
Bloem recently spoke with Amy Compton-Phillips, MD, for NEJM Catalyst, to discuss ongoing work to adapt the ParkinsonNet model in the United States and elsewhere.
Amy Compton-Phillips: You’ve been successful in building a small ParkinsonNet in Germany and now you are working with Kaiser Permanente to create a ParkinsonNet-like infrastructure in Southern California. Can you tell us what has surprised you as you’ve tried to replicate the model in new locations?
Bas Bloem: ParkinsonNet is a nationwide professional network in the Netherlands. It’s a multidisciplinary team of experts, who have been trained in the management of people with Parkinson’s disease, who collaborate as a team and adopt a patient-centered approach. Our research in the Netherlands has shown that using this network approach leads to better and more affordable care. It leads to fewer admissions and to fewer disease complications, including a 50 percent reduction in hip fractures, and that leads to substantially lower costs. Our figures in the Netherlands suggests it’s about a 20 million euro cost saving on an annual basis, which is about 7.5 percent of our chronic annual expenditure on Parkinson’s care. So that raised some interest from other countries.
We’ve built a small ParkinsonNet in Germany and just last year, we started a very exciting partnership with Kaiser Permanente, who visited the Netherlands in search of innovations that would help them deliver greater value to their clients. They identified ParkinsonNet as one of the best possible initiatives to achieve just that. So we’ve been able to partner now with Kaiser in building a ParkinsonNet-like infrastructure in Southern California. What was really surprising to me is that even though California is just about on the other side of the planet and it’s a different health care system, the wishes of patients and the wishes of professionals were identical to those in the Netherlands. The patients wanted to be taken seriously. They were craving for knowledge. They wanted professionals with expertise, and really desired teamwork. Professionals were also craving better knowledge of this complex and debilitating disease. They really valued the training we offered them and enjoyed the collaboration. One of my take-home messages has been that even though we live in different cultures and maybe work in different health care systems, a ParkinsonNet-like approach can be applied to many different cultures and many different health care systems.
Compton-Phillips: Has it been easy to adapt the model in new locations?
Bloem: Yes and no. Yes, in the sense that it proved surprisingly easy to replicate our basic training programs for health care professionals both at Kaiser and in Germany. So one of the key ingredients of ParkinsonNet is professional training. I think Parkinson’s, like almost all other chronic conditions, is so complex that you cannot leave it to a generalist only; you need experts who fully understand all the intricacies of the disease. We developed professional guidelines that form the basis for our training programs in the Netherlands, and it’s been surprising to see how well they have been adopted and received by our colleagues, both within Kaiser and in Germany.
Yet at the same time, building a network is one thing; structurally maintaining a network is another. One thing that we underestimated, both in Germany and at Kaiser, is that you can bring knowledge as a one-off enterprise to another country, but you need a team of experts within the recipient health care system itself to structurally maintain and oversee the network. We all accept the overhead that we need to run a hospital, but a network that transcends the barriers in health care also needs overhead to keep it up and running. For this purpose, you really need a team of experts within the country itself to oversee the network.
One of our other lessons has been that we shouldn’t just bring a one-off training program to other countries, but we should invest in a train-the-trainer program. Bring deeper knowledge to people within the country itself, so that once we start the training they can take over and run the network. We’ve also been surprised by the level of knowledge that was already out there, both at Kaiser and also in Germany, but it wasn’t always well organized or visible. I often say that ParkinsonNet not only creates networks of experts, it also creates the ‘Yellow Pages’ of health care and it makes very clearly visible where these experts can be found. I said earlier, it’s essential to have that team of experts within the system itself so they are empowered to govern the network once we are gone.
Compton-Phillips: Aggregating that team of experts sounds like a huge leap; often these people, though they might be clinically aligned, they may also be in competition for a similar patient set or may be lacking the infrastructure to naturally link up their disparate disciplines instead of in a siloed approach. What infrastructure actually allows you to hook up to build these networks and to hook them up together? In addition to the people, are there any tools, methodologies, or funding resources that help you to build these networks, or is it just a matter of leadership and will to make this happen?
Bloem: Regarding your remark about the competition between providers and maybe different insurers: we’ve recently joined the King and Queen of the Netherlands on a trade mission to the United States and they were able to sign a memorandum of understanding to build a ParkinsonNet in Michigan. Kaiser was a relatively easy partner to work with because they are both a health care provider and an insurer in one organization. But in Michigan, there are multiple health care providers who are in competition. There are multiple insurers who are also in competition, but we’ve actually been surprised to see how ParkinsonNet was well received by all of them as an almost generic infrastructure that serves all of their clients, regardless of who serves them primarily.
I’m not making this overly simplistic. We have been positively surprised by how a network that benefits basically all patients within a certain area can create a binding factor in a complex health care system. A critical element is the voice of the patients, because the patients don’t care who their insurer is or who their primary health care provider is — they just want good care, and they actually see ParkinsonNet as a way to get it.
It’s essential to also have some funding in place. There are two types of funding: the initial funding needed for starting up the network (e.g., the baseline training of the participating professionals) and to get the new way of working started. But even more importantly, you need an agreement with insurers to cover the ongoing costs once the network has been implemented.
Research in the Netherlands has shown that ParkinsonNet costs about $150 annually per patient but saves about $750 annually per patient on prevented hip fractures, reductions of hospital admissions, and reductions of nursing home admissions. That equation is very positive, but insurers must be willing to make the initial investment to see the return several years down the line when you see the reduction in hip fractures and admissions.
I suspect that the cost savings might actually be even greater in a system like the United States, where we know from published research that many patients don’t ever get to see a neurologist, and the number of hospital admissions seems to be a lot higher compared to the Netherlands. So the relative cost savings can even be greater in the United States.
Compton-Phillips: How has involving patients in the early design of ParkinsonNet influenced the final design of the system?
Bloem: The voice of the patients has been critical right from the start. One important element of ParkinsonNet is concentration of care. So rather than having every professional see one or two patients each year, our approach is to train a limited number of professionals who then attract a high caseload. But of course concentration of care means increased travel time. So on day one, we asked our patients in the Netherlands how much further they were willing to travel in order to find an expert, for example, in physiotherapy. The patients told us — and this might be a luxury problem for people living in remote areas in the United States — said that 20 minutes of extra travel time would be acceptable to them. From there, we determined how many therapists we needed to train in order to meet that need.
So patients were involved in the design of ParkinsonNet right from the start, and in fact, they were the ones who told us, “Please build us a network of experts because we’re not getting the expertise that we require right now.” We still use patient feedback to continuously improve the system. Whenever we deploy new technology (we have a number of clever IT solutions that support the backbone of the network), we first ask our ParkinsonNet patient panel, “Is this a good idea? Can you use the technology? Are the buttons big enough to hit when you have a tremor in your hand?”
I’m particularly excited about our nationwide quality registry called ParkinsonInsight. Our physicians and other professionals enter the information needed for a case-mix control (i.e., to control for differences in disease severity and other patient characteristics), but the outcome indicators are all completed exclusively by patients. It includes, among others, a so-called CQ index that measures the perceived quality of care as seen through the eyes of patients. And also a quality of life rating scale. So even today, the patients are the ones who really decide what is good quality of care. We feed that back in a transparent way to the physicians and other professionals as a basis for continuous improvement.
Compton-Phillips: If we really buy in to the idea that health care value is outcomes that matter to patients over the costs of delivering those outcomes, you are really getting at the numerator of that equation with having the patient-reported outcome measures. So what advice do you have for clinicians here in the U.S. that want to create ParkinsonNet here — or a DementiaNet or an MSNet or choose your condition? If we wanted to develop this kind of condition-specific expertise network like ParkinsonNet, how do you get started?
Bloem: I think ParkinsonNet, as an infrastructure, lends itself particularly well, not just to improve the care for people with Parkinson’s disease, but other chronic conditions such as dementia, multiple sclerosis, stroke, rheumatoid arthritis, diabetes. All chronic conditions can lend themselves particularly well for a network approach. Our experience with Kaiser Permanente has shown us that you can almost liken ParkinsonNet to Starbucks, where you can use the basic same ingredients, the coffee beans and the milk, to build your own customized coffee. It could be a double espresso for one or a triple grande latte with skimmed milk for another. Similarly, our basic ingredients — professional training, engaging patients as a partner, educating patients, building guidelines, clever IT to support the network — can all be copied to other chronic conditions, but then tweaked to the specific circumstances that are relevant to the care for that specific patient population.
The people interested in having a ParkinsonNet should make sure that there is baseline funding in place to kick-start the network. There should be insurers involved from day one, who want to make the initial investment, knowing that the return on investment will outweigh the initial contribution by a number of times. This is really essential.
Finally, there must be a leader within the network itself who is the figurehead of the network. The role I played in the Netherlands as a well-known Parkinson’s neurologist should be picked up by a leading MS neurologist or dementia neurologist who wants to build a professional network. I could never fulfill that role for other conditions, not even for Parkinson’s care in another country. We can of course help interested parties to build the network, but end of the day, the local experts should take the lead in running the network.
Compton-Phillips: Thank you, Bas. You’ve given us real food for thought. I really appreciate your time.
Bloem: You’re more than welcome. I hope that more networks will soon follow.
Compton-Phillips: As do I.