Advisor, Value of the Outpatient Palliative Care Clinic Pilot Research Project

How are we doing with palliative care? St. Paul’s Hospital is running a study to evaluate their new outpatient palliative care clinic, and we need people who have experience of any kind in palliative, end-of-life or hospice care (as a patient or loved one) to help ensure we do this research well.

Open to: Patient partners in the Lower Mainland

Lead Organization or Department

Occupational Science & Occupational Therapy, University of British Columbia

Aim

The aim of this research project is to provide qualitative (not numbers-based) evidence regarding the impact of the St. Paul’s Hospital outpatient palliative care clinic. A qualitative evaluation of the clinic can optimize the patient and care team experience by inciting changes to the processes early on. We are asking the following questions:

1. Does the outpatient palliative care clinic impact patients’ perceived quality of life? How does it shape quality of life for their loved ones?
2. What suggestions do patients, health professionals, and loved-ones have for improving the outpatient palliative care clinic?
3. What meaning do patients and loved ones bring to their experience of attending the outpatient palliative care clinic?

As a patient partner, your voice will help shape the way we do the research and what we do with the results. The role of the patient partner is to become part of the research team and to help with decision making about the research project. The team would share emerging insights and will listen to and address the partner’s feedback. The team will ask the partner to help with data collection and data analysis where appropriate.

Level of Engagement

This opportunity is at the level of involve on the spectrum of engagement. The promise to you is that the health care partner will involve patients in planning and design phases to ensure ideas or concerns are considered and reflected in alternatives and recommendations.

Eligibility

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 Date, time, location: There will be three meetings, each will be about 1-2 hours. The estimated dates are in February or March, May and September 2019. The time of the meeting will be determined by consulting with those attending (including the partner and one or two researchers). In-person meetings will be in Vancouver (near UBC, Vancouver General or St. Paul's Hospital). Commitment: Seven months to a year.  It is expected that preparation time for each meeting will be about 1-2 hours depending on the meeting.  There will be opportunities for the partner to be involved in local presentations of research findings. Other opportunities will be discussed with the patient partner as the project unfolds. There is an expectation for partners to complete reading, respond to emails and complete a small amount of additional work between meetings (about 3-4 hours between meetings).

Reimbursement

Partners will be provided with an honorarium to cover all out-of-pocket expenses incurred. This will be discussed in advance with the partner and provided at the time of the meetings.

Background

There is little evidence about impact of outpatient palliative care clinics. An outpatient clinic is one where the patients live at home, and come in to a clinic to get support. We know palliative care has clinical and financial benefits, but there is not enough evidence about how we can make best use of an outpatient palliative care clinic. This study will have local impact through recommendations made for continued improvement of the St. Paul’s outpatient palliative care clinic, and broad impact through its contribution to the limited evidence-base on clinic-based outpatient palliative care that is not disease specific. Those involved include two physicians associated with St. Paul's, and two researchers associated with the University of British Columbia. The study is funded by St. Paul’s and has received ethics approval through UBC. Here is an overview of each meeting:

1. Let us know what you think about the project plan and the interview questions we are thinking of using. Work on revising plan and questions as needed.
2. After some of the interviews have happened. We will provide you with some of the ideas we are learning from the interviews, and will invite you to give input/tell us what you think.
3. After all interviews have happened and we are nearly finished with analyzing the information. We will invite you to share your thoughts on what has developed and how you think we should share what we have learned.

Health Care Partner Contact Information

Larry Mróz
Patient Engagement Coordinator, BC SUPPORT Unit | Vancouver Centre
236.521.2065
lmroz@bcsupportunit.ca