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Patient Partner, Parkinson’s Disease Technology Project

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Open to Fraser – Vancouver Coastal, Patient partners in the Lower Mainland and Fraser Valley

Last updated

Parkinson’s disease is the second most common progressive disorder of the nervous system. Researchers are interested in looking at ways to improve quality of life for Parkinson’s patients by utilizing technology to help normalize walking patterns. They are seeking to partner with patients, friends or family who have been impacted by Parkinson’s to help develop their research project.

Open to: Patient partners in the Lower Mainland and Fraser Valley

Lead Organization or Department

Simon Fraser University, Menrva Research Group For more information, please check out:     www.pdstudy.ca

Aim

Patients, friends and/or family members will work alongside researchers to integrate their perspective on:
  • Use of this device;
  • Design of the study;
  • Deciding outcome measures;
  • Translating study-related documents to simple, easy to understand language and;
  • Interpreting findings

Level of Engagement

This opportunity is at the level of collaborate (at a local community or program level) on the spectrum of engagement (www.iap2.org). The promise to you is that the health care partner will look to you for advice in decision making, developing alternatives, and solutions and include your recommendations into the decision as much as possible.

Eligibility

This invitation is being extended to volunteers in the Fraser Valley and Lower Mainland area who:
  • Have been touched by a person with Parkinson’s;
  • Are comfortable telling their story and working within a team environment;
  • Are open to meeting in person and then via teleconference and/or email.
If you have a strong interest in this work but have not yet completed a PVN orientation and volunteer agreement, are unsure if your experience is a good fit or feel another format of engagement would work better with your availability, please contact the engagement leader directly.

Logistics

  • Vacancies: 1-2
  • Date/Time: First meeting sometime late August, in consultation with patient partners
  • Commitment: 1 week – 6 months, approximately 2 hours, once a month, during the first few months.  After that, it will be on an as needed basis
  • Location: Via telephone and in-person, in the North Surrey area

Reimbursement

Preapproved expenses related to travel to in person meetings will be reimbursed (including mileage, parking, tolls and/or public transit).

Background

  • Objective:  To develop and test a new technology that will help patients diagnosed with Parkinson’s disease (PD) with mobility and gait symptoms.
  • Opportunity:  Patients with Parkinson disease have multiple mobility related symptoms such as loss of balance, freezing of gait and falls. Standard therapies for Parkinson’s disease have had no effect on improving these symptoms.  Our lab has developed a new non-invasive, cost-effective device that will potentially help Parkinson patients improve these symptoms. This study will show the feasibility of the use of this device in PD patients.
  • Rationale: The cardinal symptoms of PD include motor symptoms like bradykinesia, hypokinesia and postural instability leading to freezing of gait (FOG) and falls in about 50% of individuals with PD. A recent study on 100 people with PD reported 13% people fall more than once per week, most falling multiple times in a day. Currently, there are 11,000 British Columbians suffering with Parkinson's disease, and this number is expected to double by 2016. Every year approximately 5,500 new cases are diagnosed in Canada, costing more than $30 billion annually to Canadian health care system (Parkinson Society British Columbia). Within Fraser Health Authority, approximately 1500 individuals with PD access the movement disorders clinic at Jim Pattison Outpatient Care and Surgical Center (JPOCSC) annually. Despite of the growing threat, there is no regional or national ‘action plan’ in place to address this growing concern. We envision this device to be of great benefit to PD patients in reducing the number of episodes of falls and injury.

Engagement Leader Contact Information

Jami Brown
Engagement Leader, Patient and Public Engagement | Fraser Valley
604.510.0449
jbrown@bcpsqc.ca

From Our Community

Laura Parmar

Physician Quality Improvement Coach — Northern Health

Laura Palmer

It has been so rewarding to go from an idea to working with such a great group of dedicated people from so many different organizations towards a very fun and rewarding project. Several extremely engaged PVN members expressed interest in being part of piloting a patient virtual care peer support system. I am confident that this is the beginning of many more exciting collaborations!