Proving the value of digital for Parkinson’s patients

Proving the value of digital for Parkinson’s patients

April is Parkinson's Awareness Month. The father of a dear friend, Hans Luijckx, has been living with Parkinson’s disease for almost five years and learning of his experiences during that time has been eye-opening for me. Parkinson’s affects approximately seven million people globally. While dealing with this disease they face numerous difficulties and challenges, not helped by the fact that nobody has a complete understanding of the individual journey each patient faces.

People see their lives gradually degrading, losing their dignity in their last years. For Hans, as a primary caregiver, this challenge of anticipating his father’s needs – and not knowing when he might be having a ‘bad day’ and need particular assistance – is a very real one as well.

Emerging digital technologies have global potential

As someone who works in health tech, I can easily see the global potential of emerging digital technologies to ease the burden of this disease and other neurological disorders. Technology is already starting to play a vital role in the transition to patient-centric, networked care. In the future it will help relieve the burden of chronic disease; assist in addressing the shortage of healthcare professionals; decelerate the cost increase to the healthcare system; encourage patient engagement; and ultimately empower people to lead healthier lives. But I believe it could potentially also help us to better understand and battle neurodegenerative diseases and support people to rehabilitate after acute events such as a stroke or provide long-term solutions to preventing and managing the challenges of chronic neurological disease. The ground-breaking work that Professor Bas Bloem – a healthcare innovator and authority on the care for Parkinson’s patients does with ParkinsonNet is a tangible example.

In the case of my friend, Hans, and his father, it is hard to downplay the importance of connectivity in dealing with the daily challenges associated with the illness. Parkinson’s can take a severe toll on the patient’s mental motivation levels, as well as their physical energy levels. This is combined with a general sense of social exclusion as patients experience physical symptoms that affect their mobility and dexterity.

Connecting through networks

Connecting through networks to share conversations, concerns, and even just to give each other some encouragement, can be a very powerful resource. For example, staying active is a huge part of combatting the effects of Parkinson’s, but Hans found that his father was initially not always able to muster the willingness to undertake the exercise that would help him. Becoming part of an online community and interacting with other patients, to discuss exercise routines and challenges, has significantly increased his father’s motivation levels in recent years.

The team at Radboudumc has developed ParkinsonNet to harness the value of this kind of interaction. The network brings together patients and health professionals from twelve different disciplines and allows them to transcend barriers and share experiences, best practices, validated information and questions. IT and technology help to facilitate the communication and collaboration and to make the data and insights behind quality of care more transparent. 

ParkinsonNet in the Netherlands has 68 regional networks so far, all centered around hospitals. It shares the very latest standards and scientific knowledge on the treatment of the disease with regional and local care networks and their dedicated general practitioners and caregivers. It also includes ParkinsonConnect, a Facebook-like platform with approximately 3,000 members, all busy exchanging updates and answering each other’s questions.  Many primary care providers have only limited understanding of the disease and ParkinsonNet has become an indispensable tool in providing the right care for patients under their care.

Digital networks aggregate data about Parkinson’s patients over larger populations

Networks like these have the clear benefit of enabling participants such as my friend and his father to support and help each other outside of the medical centers while involving care givers, doctors and other providers; but they also prove to have even greater intrinsic value than expected. These networks can help optimize care, reduce healthcare costs and provide a test bed for clinical trials, with access to experts who can successfully carry out studies. Data about Parkinson’s patients is getting aggregated over larger and larger populations, providing increased insights. Smart algorithms and data analysis can provide new solutions that help patients on an individual level as
as on population level.

  Realtime monitoring and predictive analytics enable the shift from reactive to pro-active medicine

An example is the Liftware ‘smart’ spoon that uses hundreds of algorithms to sense how a hand is shaking and makes instant adjustments to stay balanced so that patients can keep eating their soup.

Photo courtesy The Verge

The same goes for new surgical methods like ‘Deep brain stimulation’ (DBS) where intelligent implants are used to do realtime measurements, to suppress symptoms like Parkinson’s tremor.

Our own Philips Lifeline technology can perform fall detection, but through its new CareSage predictive analytics engine it can also monitor for physical deterioration and thus begin to predict falls; instead of just responding to a fall after it has occurred. I believe predictive analytics are a true game changer in patient care. They help to enable the shift from reactive to proactive medicine.

From subjective to quantified results

There are other examples how digital could positively impact the quality of care for people living with neurological disorders. Early in the course of the disease, the most obvious symptoms of Parkinson’s are movement-related - shaking, rigidity, slowness of movement, difficulty with walking and gait. These are, however, often accompanied with less visible issues related to thinking and behavior. Today a neuropsychologist tests by asking a person to perform a cognitive task; copy a drawing, draw an object from memory, remember a number series or solve a problem. We are looking into digitizing these tests and the possible value that would create.

We are also wrapping these tests into games, to make them more attractive to users. Our assumption is that digital cognitive assessment could provide more quantified (versus subjective) results with higher accuracy than the current tests. It could also potentially allow us to record and add more digital parameters of how people perform the tasks – for instance though continuous monitoring with wearable sensors – to create a bigger and more integrated view on one’s health for the long term.


Getting new and unique scientific insights

To maximize the impact of digital there will need to be a three-pronged data approach to predictive analysis for neurological disease. The first tests individuals periodically and tracks digitized measurements (personal performance data); the second uses devices, sensors and apps to continuously collect longitudinal data (i.e. data over time); and the third combines all of the above information with deep, clinical data (i.e. information from neurological imaging studies, genomics and medical record systems). When integrated and normalized, and supported by techniques such as machine learning, this information has the potential to generate unique scientific insights. Using patient specific health data, alongside the treatment outcomes of others with similar data characteristics, opens a window for early detection. It also allows us to create better and more personalized pathways. We can expect entirely new perspectives on diseases such as Parkinson’s, Stroke and Alzheimer’s – a development that is sorely needed.

To date, over one billion people suffer from neurological disorders. In Europe, the cost of healthcare for all brain disorders was estimated at €800 billion in 2010. In the US, neurological illnesses and mental disorders cost more than $760 billion a year. This excludes the high costs of associated social care. These numbers are set to increase sharply over the next decade.

Tools such as ParkinsonNet and others like it, are not only positive examples of how technology can be used to tackle and improve these numbers, they are also the first steps towards a completely new model of healthcare where clinical practice and digital opportunity meet. They provide patients with the necessary tools to control their own health and progress and enable caregivers to intervene at the right time. While we might not be ushering in the age of seamlessly connected health just yet, this is positive evidence that we’re at least getting closer and we hope to see fast improvement in the way Hans’ dad deals with his disease.

 



* The health-related information found above is meant for informational purposes only. It is not intended to serve as medical advice, substitute for a doctor’s appointment or to be used for diagnosing or treating a disease. Please work with your health care provider to evaluate the best treatment options for you.

Rose Mountford

Crew at Crossover for Work

3y

I am 63 years old, I was diagnosed of Parkinsons disease at the age of 57. I had severe calf pain, muscle pain, slurred speech, frequent falls, loss of balance, difficulty getting up from sitting position. I was placed on Sinemet 3 times daily, it helped me but not very much. My neurologist advised me to try natural treatments and introduced me to Mayaka Clinic Parkinsons Disease Herbal formula, I read alot of positive reviews from other patients who used the treatment and i immediately started on the treatment. I had great improvement and relief with this treatment, total decline of symptoms. Great improvement with speech, co-ordination, balance, muscle, mood etc, I gained back my life with this treatment and can never be thankful enough. Visit Mayaka Natural Clinic official website ww w. mayakanaturalclinic. com

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Leonie van Balen

Healthy Living Events at De Groenteboerin

7y

Dank voor uw inzet. Met mijn 45 jaren Parkinsonervaring, 20 jaren mijn schoonmoeder en 25 jaren mijn man, ben ik 7 jaren geleden op zoek gegaan, hoe kan ik mijn kinderen en kleinkinderen beschermen tegen deze invaliderende ziekte. Het resultaat heb ik op de website van de Stichting Help Parkinson out of the world weergegeven. http://www.leonievanbalen.com/video-2/

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Sheila Babnis

Innovation Advisor, Executive Coach, Speaker,

7y

Thanks for sharing. This gives hope to those struggling with Parkinson's and those caring for them.

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