News Feature- Perspectives in Parkinson’s

When Bob Thomas, 65, began having difficulty tying his shoes and even walking around, he knew something was wrong.  After a visit to the doctor, he was diagnosed with Parkinson’s disease and began medications and joined the Parkinson’s support group in his small northern Michigan town.  When his condition suddenly took a turn for the worse, he found himself in a nursing home.  Although few were optimistic about Bob’s future,  to everyone’s surprise he began to regain functionality.  Puzzled, Bob visited another neurologist that told him he did not actually have Parkinson’s.  He was diagnosed with hydrocephalus, or fluid on the brain, and he had a shunt put in.  Six months later Bob was playing golf.

This story of confusion and misdiagnosis is unfortunately not rare.  Diagnosing and treating Parkinson’s can be challenge, especially in areas with limited access to neurologists. Parkinson’s disease is a progressive motor disorder that affects 6.3 million people worldwide. But a collaboration of researchers are exploring the diagnostic challenges of the disease with an innovative approach-  cell phones as medical tools.

The power of using mobile technology is quickly becoming realized in many areas of medicine by clinicians, patients, and caregivers.  Much of the attention of technology in medicine is on the use of electronic medical records. However, the use of mobile technology and social media is being realized outside of hospitals. This is the driving force behind projects such as the Parkinson’s Voice Initiative, that strive to identify and target unconventional diagnostic markers such as voice changes.

One unique challenge of Parkinson’s disease is the lack of a clear diagnostic test. There are currently no indicators of Parkinson’s that can be detected using a blood test or imaging techniques.  The current diagnostic procedure involve conducting expensive and time consuming symptom tests.  However, these are not frequently done outside of a research setting and the clinician is left to make a judgment call.  A diagnosis should be made by a neurologists, but family doctors are increasingly addressing Parkinson’s cases, especially in areas with limited access to specialists.

A project to address this diagnostic deficit is being spearheaded by Dr. Matt Weeks. Dr. Weeks is the director of the Parkinson’s Voice Initiative, a project to record the voices, both of healthy people and those with Parkinson’s, of 10,000 voices over phone calls.  These will be used to develop specialized algorithms to rank symptom severity on standard clinical scales based on the degree of tremor in the voices. This could be used as a unique biomarker to track disease progression and eventually used as a diagnostic tool.

The ability to diagnose and track the progression of the disease using mobile technology would especially help patients in rural areas.  Diane Patterson, the director of the Cadillac senior center in northern Michigan, explains the specialist deficit.  “Other than one visiting neurologist in town one day a month, there are no neurologists within a 45 minute drive.  Family doctors are increasingly diagnosing and treating them.”  However, handling Parkinson’s patients is often beyond the expertise of family doctors and can lead to situations like Bob’s. Hettie Molvang, the Parkinson’s support group leader in Traverse City, also cites the long distances between towns and hard winters as big challenges in the area that could be helped with technology.  “Telemedicine is the future of medicine and our area is in a prime position to benefit from these advances,” said Molvang.

Tools to diagnose and measure disease progression represent one component to managing the disease.  Accurately recording symptoms, including voice changes, can provide deeper insight in tracking disease progression and treatment effectiveness.  This is the driving force behind PatientsLikeMe, a social network to track symptoms, share experiences, and learn how to manage chronic diseases.  This has been a successful resource for Parkinson’s patients as it represents the seventh most well represented disease on the network and the largest in those over 65 in age.

In addition to its role as an online community, PatientsLikeMe is a powerful research tool.  The data that the patients enter on their symptoms is de-identified and aggregated into databases for research. Since the inception of PatientsLikeMe in 2004, the network has provided information for 16 publications and inspired several clinical trials.  The Human Dynamics Group from MIT used the symptom data from Parkinson’s patients on PatientsLikeMe to redefine the clinical standards of disease progression. The online self-reported data was found to be inconsistent with the golden standard of clinical symptom progression in Parkinson’s disease. The research team redefined the clinical standards and the findings were published in the Journal of Medical Internet Research.

In December 2012,  PatientsLikeMe joined forces with Dr. Little’s Parkinson’s Voice Initiative program with the goal of adding voice change biomarkers to Parkinson patient profiles.  This represents an important addition to self-reported data.  According to Sally Okun, the Vice President of Advocacy, Policy and Patient Safety of PatientsLikeMe, the goal is to eventually bring clinicians into the PatientsLikeMe online space. Having access to data beyond self report would be especially useful as the network advances.

These initiatives are part of a shift to create a much different healthcare environment.  However, this doesn’t come without challenges.  Okun explains that “doctors are not always supportive of PatientsLikeMe because it may lead the patients to second guess their own treatments when they are comparing to others online.”  In one cross sectional study, 12% of patients switched doctors after comparing their treatment options to others online. Although this may be a good thing if it is leading to better care, it does not garner resounding support from physicians.

Despite the challenges, the work done with Parkinson’s diagnostics is indicative of the direction that medicine is headed.  The future of technology in medicine has the potential to improve diagnostics, treatments, and have a better understanding of Parkinson’s disease as well as countless other conditions.  Quality of life should not be compromised because of lack of resources or expertise.  Bob has too many more rounds of golf for that.

 

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About Kaitlyn

Kaitlyn is a first year medical student at the University of Michigan Medical School interested in innovations in medical education. When she is not preparing to be a physician, chances are she is on her bike!

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