Focus Group or Interview Participants, Review of Treatment Options for Parkinson’s Disease

Ever wonder how decisions are made about the effectiveness of treatment options and wish you could influence the decision-making process? Share your experience with Parkinson’s Disease to assist a team at UBC to ensure patient perspectives are included in a review of advanced stage therapies and treatments for Parkinson’s Disease.

Open to: Patient partners across the province

Lead Organization or Department

Centre for Clinical Epidemiology and Evaluation, University of British Columbia (UBC)

Aim

This Health Technology Review will study the effectiveness of treatment options available to patients with advanced stage Parkinson’s Disease. The Health Technology Assessment (HTA) team will provide a report to the Ministry of Health that includes evidence-informed recommendations about which therapies should be publicly paid for in British Columbia. Patients and caregivers of individuals with Parkinson’s Disease will be invited to participate in a telephone interview or focus group to explore their experience of Parkinson’s Disease. The information gathered will assist the HTA team to better understand the treatment options and outcomes that are important to patients, as well as their experiences of treatments received to date. This will ensure the patient perspective will guide the evaluation of the clinical literature and will also inform the health policy recommendations made in the final report.

Level of Engagement

This opportunity is at the level of consult on the spectrum of engagement (www.iap2.org). The promise to you is that the health care partner will listen to and acknowledge your ideas and concerns, and provide feedback on how your input affected the decision.

Eligibility

• Comfortable sharing experiences with advanced stage Parkinson’s Disease as a patient or caregiver
• Ability to participate in an English-language telephone interview or focus group
• Preference will be given to ensuring that patient partners are representative of both rural and urban areas of the province
• 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 Leah Smith directly.

Logistics

• Vacancies: 10-15
• Date and Time: Telephone interviews and focus groups will be conducted on weekdays at a time that is convenient for patient partners.
• Location:

1. Telephone – One-on-one interviews will be conducted by telephone. Patient partners will be called by the interviewer.
2. Focus Group – Patients with Parkinson’s Disease in greater Vancouver may have the option to attend a focus group at the Vancouver General Hospital. Patient partners in Vancouver who prefer to participate in a telephone interview (rather than a focus group) may do so. Please note: all caregiver interviews will take place over the telephone.

• Commitment: One time event; under 1.5 hours

Reimbursement

Telephone interviews - No out-of-pocket expenses are expected to be incurred. Focus Group – Patient partners who attend the focus group will be reimbursed $20 by the health care partner to cover all expenses related to local travel. Patient partners will not be required to submit receipts for travel expenses, but will be asked to sign a form confirming acceptance of the money.

Background

The Health Technology Review (HTR) is a joint BC Ministry of Health and Health Authority process used to provide evidence-informed recommendations about which non-drug health technologies should be publicly provided in the province. Additional information on the Health Technology Review process is available online at www.health.gov.bc.ca/htr. The purpose of engaging patients is to ensure that the research team conducting the review understands the outcomes that are important to patients, alongside their perceptions and experiences of the treatments available for advanced stage Parkinson’s Disease. This will guide the evaluation of the clinical literature and health policy. The HTA team is very interested in hearing about the patients’ experience with advanced Parkinson’s Disease and treatment, such as the impact of therapies in improving or sustaining quality of life, social interactions, usefulness and side-effects of treatments, or any other factors related to the experience that are identified as important to the patient. The team is especially interested in hearing from patients who may have undergone Deep Brain Stimulation (a surgical procedure), or received treatment via the Duodopa gel (levodopa-carbidopa), and how this may have impacted their experiences with symptoms and quality of life. All information provided is confidential and will only be reported in a manner that protects individual privacy. Additional information related to privacy of personal health information will be shared with participants at the beginning of the interview or focus group. Participants will be provided with a brief description of the information incorporated into the final report.

Health Care Partner Contact Information

Leah Smith
Engagement Leader, Patient and Public Engagement | Southern Vancouver Island
778.678.3977
lsmith@bcpsqc.ca