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Research updates from Island Health.
Winter-Spring 2016

 

good news
bringing health research to Island life
Winter-Spring 2016

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Research Studies from the Other Side:
the Participant Perspective

We hear regularly from clinicians about their research, but how does it feel to be part of that research from the other side? We thought it was time to ask the people directly involved: our study participants and their family members. Our Clinical Research Manager sat down with some of them and asked them to share their thoughts and feelings about their research experience. Here’s what we heard.

Our participants said that while study visits can be time-consuming, the one-on-one time and care they receive during those visits is invaluable: “we feel lucky to get all the attention we do!” To be able to see a neurologist and have the time for a full discussion was much appreciated: “I really like the neurologist. He comes across as a knowledgeable physician with an excellent bedside manner. He’s very current in his knowledge, is active in the community, and his name appears everywhere.”

Both study participants and their families valued the opportunities that are part of being in a study, including access to imaging (like MRIs and CT scans) without a considerable wait; the chance to see various specialists; and frequent access to the study physician as well the study team, which means a degree of attention that isn’t always possible outside of the research environment. One family member said it was actually therapeutic for the study participant to see a full team caring for her and trying to help her. Many participants build a strong rapport with the study team as a result; as one participant put it, “the staff is very friendly, always welcoming, always available, always smiling—not usually seen in big hospital settings.”

In addition, study participants have access to new drugs and treatments that could make a difference in their condition; one participant noted that the drug being tested was “the only potentially beneficial drug available” to her. Having access to free coffee, tea, and snacks while they were visiting was appreciated too! We also got some wonderful ideas on how to make their experiences even better, and to ensure they feel appreciated and listened to—for example, by providing a calendar with details about future visits, improving the waiting area, and welcoming friends and family during their visit. We’re striving to reflect these suggestions in the way we work every day.

We’re grateful to all our study participants for sharing their time with us, and for working with us hand-in-hand to improve care and treatments through research. We couldn’t do it without you (we really mean that!)

Did you know? Island Health has 23 currently active studies with 174 enrolled participants. We conduct clinical trials in the following areas:
  • Endocrinology (diabetes)
  • Neurology (Multiple Sclerosis, Stroke, Dementia)
  • Acute Care
  • Nephrology (dialysis)

Local Research on Study Participant Experience Goes National

  • In 2009, researchers on Vancouver Island initiated the first formal research survey of clinical trial participants, recognizing the importance of understanding their experience.
  • In 2012, the province of BC picked up the project and expanded it into the BC Clinical Trial Participation Survey.
  • As of 2016, the provincial survey been picked up and expanded once again into the National Clinical Trial Participation Survey!

Here are some results from the provincial survey:

Top 5 Reasons for Declining to Participate

  • 50% did not have time due to work/commitments
  • 37% felt the trial was too burdensome or demanding
  • 34% did not feel health would benefit
  • 24% wanted to be paid more for time and expenses
  • 23% would if trial was outside of working hours

Top 5 Reasons for Agreeing to Participate

  • 94% found the consent form clear and easy to understand
  • 87% felt it would benefit others if they didn’t benefit
  • 69% had no commitments conflicting with study visits
  • 64% felt the doctor wouldn’t ask them if the risk was too great
  • 63% felt that participating would improve their health

How to Get Involved in Research

Interested in being a part of research?
Interested in learning more about clinical research?

The Researcher Next Door: Dr. Samaad Malik


Dr. Malik (MD, MSc, FRCSC) is a surgeon with particular interest in bariatric surgery and minimal access procedures.

He is a Clinical Assistant Professor in the Department of Surgery at UBC, and practices at Victoria Surgery.

Tell us about your research: Our research is primarily clinical – we focus on patient outcomes, and we really want to know what our outcomes are in order to identify issues that can lead to better patient care. In order to know what’s going on, we need to know our data, and the best way to do that is through research.  For example, our most recent study involved the analysis of patients undergoing laparoscopic sleeve gastrectomy for morbid obesity for the last 5 years. This data provided surgeon specific results to inform our patients.

What drew you to research? This is an opportunity for us to go into areas that have never been dived into before—an opportunity to be more knowledgeable in areas that are foreign to us. When we present our results, we have the opportunity to share this with our peers which is quite exciting. It’s a different type of fulfillment.

Can you tell us how your research has changed practice? Absolutely—research allows me to tell my patients what my data is, what my stats are, and how they compare to the literature. I think every patient wants to know that they’re in good hands, and that their surgeons have good numbers to back them up; having your own numbers is different that quoting other peoples’ work. I think it’s time we actually took responsibility and ownership of our own data in order to help our patients make care decisions.

When did you start conducting research as part of your practice? I can’t speak to a time when I was not participating in research opportunities! Research is something I was introduced to early in my training, and I continued it as I became staff. Now I pass it on to my students, so the roles have reversed. Research is something I enjoy doing, and I try to share that excitement with my students when I bring them on; it gets passed on from year to year. We’ve worked with quite a number of students over the years.

What’s your favourite thing about living on Vancouver Island? Victoria and Vancouver Island are fantastic: driving short distances allows more free time in the day; I have not worn a winter jacket in 5 years since moving from Saskatchewan; there are many great outdoor activities, and you can do things outdoors every day. It really is a beautiful place to live.

What’s your top health tip? It may sound selfish, but do not forget about yourself. You really have to focus on yourself at times in order to be happy, and if you’re happy, everyone around you is happy.

Save the Date for Five Days in May!

Five Days in May is Island Health’s flagship health research month, bringing together healthcare providers, researchers, decision-makers, patients, and the public in a series of talks and workshops designed to educate, inform, inspire, and stimulate.

This year, we're planning open events on the following themes: 
  • Tuesday, May 3: Making the Change: Patient-Oriented Research
  • Tuesday, May 10: Clinical Research in the Real World
  • Tuesday, May 24: Building Healthy Communities - Research Priorities for BC
  • Tuesday, May 31: Big Data, Big Stories
Stay tuned for registration details and agendas!

Upcoming Events


Let's Talk Science: Learn from UVic Medical Students about today's hot health topics!

Tuesday, March 1: 11:30 – 12:30 pm - "Opioids: The Good,  the Bad and the Ugly"
  • Medical Sciences Building Room 150
  • Parking fees will apply and the campus lots can be very busy, please plan ahead. In lot E, there are metered spots available. Lot 6 has a Ticket Machine. See UVic Maps
Thursday, March 3: 11:30 am – 12:30 pm - "The Good, the Bad and the Gluten"
  • Medical Sciences Building Room 150
  • Parking fees will appy and the campus lots can be very busy, please plan ahead. In lot E, there are metered spots available. Lot 6 has a Ticket Machine. See UVic Maps
Wednesday, March 16: 7:00 pm - Café Scientifique - “An Evening with Batman’s Brain”
  • Farquhar Auditorium at UVic. More information
  • Seats are going quickly! Research yours online through the UVic Ticket Centre or call 250-721-8480.
  • Parking fees will apply and doors will open at 6:30 pm.
Ideafest is the University of Victoria's research festival, celebrating the ideas of faculty, students and staff from across the university. It's an open invitation for the public to explore ideas with some of the brightest minds at the university. 

Don't miss these great health research events:

Health Research Opportunities

Vancouver Island has a vibrant health research community that includes Island Health, our Island universities, and community-based research organizations. Victoria has 10 clinical sites of specialists, general practitioners, research nurses, and coordinators, collectively known as the Island Clinical Research Collaborative. To learn more about these sites, see this factsheet.
 
Below, you’ll find further details about some of the studies currently seeking participants in the region.

BI 1289.5 Study
 
Area: Alzheimer's

Purpose: To study the effectiveness of an experimental drug on people with early symptoms of Alzheimer’s Disease who have not been previously treated for it.


Eligibility: 55 years of age or older

Contact: Study Coordinator Sheilah Frost at 250-370-8261 or Sheilah.frost@viha.ca
Navigate ESUS Study

Area: Cardiovascular
 
Purpose: This study aims to prevent secondary stroke and systemic embolism in patients with a recent Embolic Stroke of Undetermined Source (ESUS) by comparing the effectiveness of rivaroxaban 15 mg once daily with aspirin 100 mg. 
 
Eligibility: Diagnosis of recent stroke of unknown source (ESUS).
 
Contact: Study Coordinator Sheilah Frost, 250-370-8261 or Sheilah.frost@viha.ca
CASPER Study
 
Area: Cardiovascular

Purpose:
The study will help to evaluate the current medical testing strategy for unexplained cardiac arrest (UCA) and compare unexplained cases in the hopes of determining what caused them. The study is sponsored by the Diamond Health Care Centre and Dr. Andrew Krahn. 
 
Eligibility:
Persons who have experienced an unexplained cardiac arrest (UCA) or are first-degree relatives of a person who has experienced a UCA may be eligible to enroll. Enrolled patients will have their health records collected and added to the CASPER database, and will be asked to donate a blood sample to the CASPER biobank.
 
Contact:
Fritha Munday, Study Coordinator, 250-595-0400 or fmunday@catrials.org
Type 2 Diabetes
 
Area: Endocrinology

Purpose:
This study will assess the use of metformin in women with Type 2 Diabetes in pregnancy.
 
Eligibility:
Individuals must be pregnant and between 6 and 22 weeks gestation, diagnosed with  Type 2 Diabetes, currently taking insulin
 
Contact:
Karen Coles, Study Coordinator, 250-519-7700 ext. 13630 or Karen.coles@viha.ca
PREVENT Study
 
Area: Neurology (Alzheimer's)

 
Purpose:
This study is a research project at the University of Victoria that aims to identify those at risk of memory decline and Alzheimer’s disease by focusing on various lifestyle, health, and biological indicators.
 
Eligibility:
If you or someone you know has been physician-diagnosed with Mild Cognitive Impairment or Alzheimer’s disease, please contact the PREVENT Study research office immediately.
 
Contact: 50-853-3839 or prevent@uvic.ca
 

This research study has received ethical approval from the University of Victoria’s Research Ethics Board. The Research Ethics Board of Vancouver Island Health Authority has not participated in the ethical approval of this research study, and recommends that you direct any questions or concerns about the study to ethics@uvic.ca or 250-472-4545.
Sequencing and genotyping in Parkinson’s disease and extrapyramidal syndrome
 
Area: Neurology

Purpose:
This study has been undertaken to locate the gene, or marker for the gene, that is responsible for developing Parkinson’s disease or extrapyramidal disorders (disorders that look similar to Parkinson’s disease). This study will analyze blood samples from people with Parkinson’s disease and relatives to these people. This study is being conducted at The University of BC and the Vancouver island Health Authority.
 
Eligibility:
We are looking for people who are:
-fluent in English
-can provide written consent
-have one of the following diagnoses and family history of similar diagnosis: 1) Parkinson’s disease or  2) Parkinson’s-like  movement disorder (extrapyramidal disorder)
 
Contact:
Please contact the Study Coordinator, Tara, by phone at 604-822-0322 or email to tcandido@can.ubc.ca
 
New Parent Physical Activity Study
 
Area: Physical Activity

Purpose:
To determine whether or not certain strategies administered immediately post-partum can help to improve physical activity levels among new parents in the first eight months post-partum.

Eligibility:
Common law or married couples who reside in Victoria, BC and who are expecting their first child or have just had their first child within the past two months. Same-sex couples and surrogate parents are equally encouraged to participate. 

Contact: Alison Quinlan, bml@uvic.ca or at 250-472-5288
 

This research study has received ethical approval from the University of Victoria’s Research Ethics Board. The Research Ethics Board of Vancouver Island Health Authority has not participated in the ethical approval of this research study, and recommends that you direct any questions or concerns about the study to ethics@uvic.ca or 250-472-4545.
Family Physical Activity Study
 
Area: Physical Activity

Purpose:
This study will examine whether different strategies help to promote family-based physical activity.

Eligibility:
Families living in Victoria with at least one children between the ages of 6 and 12 who is getting less than 60 minutes of moderate-to-vigorous physical activity each day. Same-sex couples are equally encouraged to participate.
 
Contact: Alison Quinlan, bml@uvic.ca or at 250-472-5288
 

This research study has received ethical approval from the University of Victoria’s Research Ethics Board. The Research Ethics Board of Vancouver Island Health Authority has not participated in the ethical approval of this research study, and recommends that you direct any questions or concerns about the study to ethics@uvic.ca or 250-472-4545.
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