Changing Attitudes Towards Healthcare

In September 2016, the World Parkinson Congress (WPC) was held in Portland, Oregon. This international forum provided attendees with the opportunity to learn about the latest scientific discoveries, medical practices and caregiver initiatives related to Parkinson’s disease. One of the themes that emerged at the conference was the shifting attitudes in public health towards a more preventative, rather than treatment-based, approach. This approach, and some of the tools that have been developed as a result of this shift, may be useful for people with Parkinson’s disease (PD).

Patient-driven Care

Preventative healthcare often places greater responsibilities on the patient; however, this need not be burdensome. American research associate Melanie Swan summarizes patient-driven healthcare as the process of the patient collecting information about variations in their health and analyzing and sharing this information with their healthcare providers (Swan, 2009, p. 492). According to Swan, both technology and self-tracking are major components of this type of care.

Interactive online platforms provide tools where people can track their own symptoms, share information and provide emotional support for one another (ibid). The number of virtual health services has expanded making it easier than ever to connect with a physician in Canada. Activity trackers, such as Fitbit, allow individuals to track their exercise, diet and sleep patterns. It is a logical progression that physicians, innovators and the average individual are beginning to turn attention to how technology can assist with healthcare for conditions such as PD.

Self-tracking

Self-tracking includes measuring many different types of information, from biological to behavioural (ibid). Monitoring one’s own health can lead to earlier diagnosis of conditions, as well as the identification of more effective treatments in consultation with one’s physician. Focusing on prevention and alternative methods of symptom management is one way in which individuals can take more control of their own health.

Sara Riggare is a Parkinson’s advocate and PD patient who is working on a PhD in selfcare at Karolinksa Institute in Stockholm, Sweden. She presented at WPC regarding her approach to self-tracking for Parkinson’s. Riggare defines self-tracking as measurement or monitoring to learn about yourself. While tracking can be facilitated through the use of technology, she also promotes a ‘low-tech’ method – pen and paper. Riggare explains that self-tracking “can be a very powerful tool to find answers to your own questions about Parkinson’s... [it can help] improve your situation and optimize the effects of your medications”. She encourages people with Parkinson’s to track medication intake, stress and other factors. To Riggare, self-tracking is a way of life because, “I see my neurologist twice a year, about half an hour every time. That’s one hour per year in healthcare for my Parkinson’s disease. During the same year I spend 8,765 hours in self-care, applying my knowledge and experience together with what I get from my neurologist to manage a difficult disease the best I can” (Riggare, 2014).

Tracking for Long-term Studies

Researchers have caught on to patient tracking, and a number of studies based on the principle have been executed or are currently taking place around the world. Here in British Columbia, Dr. Martin McKeown of Pacific Parkinson’s Research Centre at UBC and Kathy O’Donoghue, a former video game designer, had the idea for a mobile game – also known as an app – that can help monitor patient cognition. The app, CognitiaPD, was first tested at WPC and is currently being used as part of a large Parkinson’s research study that will collect data through mobile games. The app includes two games, one is called Animal Snap and it monitors response time by requiring players to tap a screen when animals appear. The other game, Gift Shop, tests memory. Two items appear on the screen, and then the game asks the user in which order the items appeared. As the game goes on, it becomes more complex, with more items appearing on screen. Afterwards, it assesses how correct your responses were.

If users play these games regularly, it can allow physicians to better track and assess motor and cognitive changes. Ideally, better data can improve medication recommendations and dosages, and help minimize the frequency at which Parkinson’s patients are hospitalized with severe symptoms.

Whether you choose to communicate the details of your condition with healthcare professionals, or keep your data to yourself, self-tracking can be a useful tool for people of all ages and health conditions. Chances are, you are probably already tracking your health in one way or another! While technology is at a point where it can help facilitate the process, there are low to no-tech ways to track and better understand your symptoms. Self-tracking will never replace the advice and care of professionals, however it can help you identify simple ways to manage the disease and take charge of your own health. On a larger scale, it has strong potential for assisting with Parkinson’s research.

Sources

Rigarre, Sara. (2014). 1 vs 8,765 [Blog post]. Retrieved from http://www.riggare.se/1-vs-8765/

Swan, Melanie. (2009, Feb). Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking. Int. J Environ Res. Public Health, 6(2), 492- 555. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2672358/ 

This content was published in the Spring 2017 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.