Patients + Research: Annette McKinnon

At 32 I was a mom to two boys and working part time. When I started to have problems with my hands, feet and overall exhaustion, of course I went to see my doctor. He kept telling me I was just a normal busy mom. This caused a delay of more than a year before I got a diagnosis of Rheumatoid Arthritis. By then my joints had a lot of damage. It was hard for me and for my family to accept this new ‘normal’ in our lives.

Patient Advocate Annette McKinnonOften chronic disease makes people feel depressed and I was no exception, but between my determined physio and a clinical trial of a new drug that my doctor suggested, I was able to reach a turning point.  The positive feedback I got from one of the trial doctors made me realize that even with health problems I could change my life through my own actions.

That encouragement led me to try to find and use research papers from PubMed and to share what I learned about RA in private health groups and on Twitter.  A friend called it evidence-based tweeting.

Through these efforts I attended an IDEO design thinking workshop. Every patient was partnered with a group of Health Care Professionals and we spent a day of developing a prototype solution for a patient issue – mine was communication between doctor and patient. We created very effective solutions and I thought my team was brilliant. It wasn’t till the next day that I credited myself with having been a team member too.

Because of this conviction of the value of patient knowledge and the patient voice I have persisted in trying to be a patient who is involved in many aspects of the health system.

The first time I was involved in research, as a patient member on a research team, I thought I was helping out, and ended up as a co-author.

Since then I have been on research teams in Ontario applying for grants and also in doing the work after funding. It takes a lot of effort on both sides. The patient voice in research is especially necessary – I had found it shocking in the past to find doctors and researchers used to be the only ones who had input into which results were important to research, rather than finding out what was important to patients.

It has taken a long time for me to become a partner in research, rather than a subject who is being studied. This would have been impossible even ten years ago. I’m so pleased that at last the culture of health care is moving towards the inclusion of patients in meaningful ways.

Anyone who is an active patient will tell you that it is almost always done on a volunteer basis, but being involved has definitely made me healthier, and that’s worth more than money.

 

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Want to add your voice to the Patients + Research blog series? Email or call Elise Bradt at ebradt@caho-hospitals.com, 416-205-1469, or direct message or tweet at us on Twitter at @CAHOhospitals.

Read more Patients + Research posts and share your own insights on Twitter with the hashtag #onHWS. To learn more about how health research makes Ontario healthier, wealthier and smarter, visit our impact page, and check out our other blog posts and videos.

RESEARCH SPOTLIGHT: St. Michael’s Hospital

St. Michael’s scientists get down to business

Up on the 5th floor of the Keenan Research Centre for Biomedical Science, Dr. Richard Gilbert, head of the Division of Endocrinology and Metabolism for St. Michael’s Hospital, and Dr. Darren Yuen, a nephrologist with the hospital, work together on cases where diabetes and kidney disease intersect.

On top of stethoscopes and microscopes, the pair has added business scope to their frequent discussions—with the launch of a company called Fibrocor.

Drs. Gilbert and Yuen are two of the three scientific co-founders of Fibrocor, who will work to identify targets and develop therapies to prevent, slow and ultimately reverse organ scarring.

Read more about how research hospitals are driving Ontario’s knowledge and innovation economy.

“Scarring, or fibrosis, can help people in the short-term—such as healing after a cut or sealing off an infection so that it does not spread—but when an injury is chronic, such as with diabetes, the amount of scar tissue formed can cause organ malfunction,” said Dr. Gilbert, who also holds the Canada Research Chair in Diabetes Complications.

The researchers and fellow co-founder Dr. Jeff Wrana, senior investigator at Sinai Health System’s Lunenfeld-Tanenbaum Research Institute, will test biopsy samples of scarred human tissue. They will measure which genes the body activates when scarring begins.

“Once we know what pathways are involved in activating the body’s scarring response, we’re well on our way to understanding how to block it,” said Dr. Yuen. “And because we’ll identify these pathways using human tissue samples, we think they’ll have a much better chance of being effective in future clinical trials.”

Although scarring underlies the development of liver failure, heart failure and certain type of lung disease, the company’s initial focus will be on kidney disease—reflecting Dr. Gilbert’s and Dr. Yuen’s clinical backgrounds and the tremendous unmet need.

By 2018, Fibrocor expects to have developed a new anti-scarring drug that will be ready for testing, not only in kidney disease but also in other diseases that involve fibrosis, the doctors said. The world-class academic team is complemented by management and business development from MaRS Innovation and drug discovery and development services from Evotec AG, which together launched the company with $2M USD financing.

“Because drug development is incredibly expensive and most granting agencies don’t fund this sort of activity, forming the company was a necessity,” said Dr. Yuen. “With Fibrocor, we’ll be part of the developmental strategy, taking our knowledge from the clinic, to the lab, to the boardroom and, hopefully, all the way back to the bedside.”

Written by Geoff Koehler at St. Michael’s Hospital

 

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St. Michael’s Hospital is one of Ontario’s 24 research hospitals that contribute to a healthier, wealthier, smarter province. Read more Research Spotlight posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.

 

RESEARCH SPOTLIGHT: St. Michael’s Hospital

LifeVest was born to help babies

LifeVest, a technology being developed at St. Michael’s Hospital to help newborn infants breathe, won the Global Healthcare Innovation Academy’s international competition in Calgary.

Global Healthcare Innovation Academy brought together innovators, entrepreneurs, investors, and industry for its scientific and business innovation competition. The projects involved were recognized for cultural, scientific, technological, and/or social impact.

Premature infants have underdeveloped lungs and weak respiratory muscles, while other newborns may have pneumonia or other lung diseases. Because of such challenges, premature newborns or full-term babies with breathing difficulties may require specialized hospital care in a Neonatal Intensive Care Unit (NICU).

“For such critically ill newborns, breathing support with a mechanical ventilator is a life-saving treatment,” said Dr. Doug Campbell, director of St. Michael’s NICU. “But existing mechanical ventilation leaves much to be desired. Nasal devices can cause skin breakdown and permanent damage to infants’ noses. Current devices and ventilation techniques are imperfect and can interfere with breastfeeding and hinder parent-infant bonding.”

Dr. Campbell’s LifeVest pitch partner, Dr. Jennifer Beck, is with the hospital’s Keenan Research Centre for Biomedical Science. She’s part of a St. Michael’s research group that developed and commercialized neurally adjusted ventilator assist (NAVA). The group continues to develop technologies for mechanical ventilators, including LifeVest.

“In healthy people, the brain sends a signal to the diaphragm, telling the muscles to contract and relax—breathing,” said Dr. Beck. “For critically ill patients, the brain still sends the signal but the body is not able to properly perform the request.”

How LifeVest works

With NAVA technology, electrodes on the patient’s feeding tube pick up the brain’s signal to the diaphragm and tell the ventilator when and how much to breathe for the patient.

An infant would wear a vest (similar to a life jacket), and the ventilator triggered by the NAVA signal would pull gently on the chest by applying negative pressure. This would greatly assist the infant’s breathing. Dr. Beck said the concept has similarities to the old-fashioned iron lung, but the LifeVest is much easier to use. As well the materials will be lightweight and suitable for babies’ sensitive skin.

World-class innovation, international recognition

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Drs. Doug Campbell and Jennifer Beck present LifeVest at the Global Healthcare Innovation Academy’s international competition in Calgary. (Photo by Chris Gee)

Fourteen innovators and start-up entrepreneurs from around the world competed for the Global Healthcare Innovation Academy’s $25,000 top prize. Each team presented a scientific pitch and six projects advanced to the competition’s second day to deliver a business pitch.

LifeVest was selected by the panel of judges based on criteria which included market opportunity and competitive advantage, problem and solution fit, and team and leadership. These judges came from a diverse portfolio of international expertise ranging from research and innovation agencies, to respected entrepreneurs and industry leaders.

St. Mike’s is driving research, clinical innovation and commercialization

LifeVest was born out of a research competition put on by St. Michael’s Foundation. Since 2015, St. Michael’s has run an Angels’ Den competition where teams pairing a researcher and clinician have competed for research funds. LifeVest won St. Michael’s 2015 Angels’ Den contest. MaRS Innovation provided business pitch support to LifeVest and the two 2016 Angels’ Den finalists who also competed at this year’s Global Healthcare Innovation Academy:

“We’re thrilled for Jennifer and Doug,” said Dr. Arthur Slutsky, vice-president of Research for St. Michael’s. “All three St. Michael’s teams represented the hospital well against stiff international competition. Each innovative project is a testament to the calibre of the research taking place in St. Michael’s labs and clinics, as well as the support of our Foundation through the Angel’s Den events.”

 

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St. Michael’s Hospital is one of Ontario’s 24 research hospitals that contribute to a healthier, wealthier, smarter province. Read more Research Spotlight posts on our Healthier, Wealthier, Smarter blog or join the conversation about why health research matters for Ontario on Twitter, using the hashtag #onHWS.