Patients + Research: Why it matters to you and you matter to it

By The Council of Academic Hospitals of Ontario (@CAHOhospitals)

Research hospitals in Ontario and Canada are home to some of the world’s top scientific minds, who are discovering the unimaginable cures of the future and developing treatments for patients today. While there is no question that patients are the beneficiaries of this research, so often they face barriers to engagement.

On Wednesday, January 13^th from 1–2 pm ET (time zone converter), we want to discuss the relationship between patients and the research community, considering the barriers and opportunities to improve engagement. From learning about research, to informing research priorities, to participating in research studies, to benefitting from (or to being the recipients of) breakthrough treatments, we know that health research matters to patients. We also know that there are many things we can do to improve patient engagement in research.

As a patient, how much are you aware of, involved with, or impacted by health research? What platforms do you look to for information, or to share your story with others? We hope that you will share your insights with us as we ask:

• T1. Why does health research matter to you?
• T1b. What impact has health research had on your care experience?

• T2. How can the patient voice support, improve or empower health research?
• T3. How can social media tools break down barriers between research and patients?
• T4. What kind of research information are you looking for on social media?

The Council of Academic Hospitals of Ontario (CAHO) has already started to grow this conversation through our Healthier, Wealthier, Smarter campaign, which launched on June 1^st, 2015. Our campaign hashtag, #onHWS, has become a platform for health research and patient story-sharing, and we have just launched a new patient-focussed blog series, Patients + Research. Here’s what some of our patient partners have shared already:

“Circumstance led me to the treatment that I received – but my experience, as a patient, will help to change that for others in the future.” – Tina Ceroni. Watch Tina’s full story “Building a HEALTHIER Ontario”.

“I was diagnosed with a rare cancer, and given only years to live.  If it wasn’t for Dr. Kouroukis’s participation on this international clinical trial, I’m not sure that I would have found an alternative treatment.” – Gretta Hutton. Read Gretta’s full story in the CAHO Cataylst.

“There is a plethora of amazing science and research but a gap on how we translate and disseminate it to the general population. Who better to close that gap than patients, who can educate society, evaluate progress, empower people, evolve language and attitudes, and eradicate stigma?” – Gail Bellissimo. Read Gail’s Patients + Research blog post.

Even after our #hcsmca chat, we encourage you to continue sharing your insights and stories on our Healthier, Wealthier, Smarter platform, either through our Patients + Research blog series, or our #onHWS community.

If you would like to participate in the Patients + Research blog series, please email or call Elise Bradt at ebradt@caho-hospitals.com, 416-205-1469, or tweet at @CAHOhospitals.

 

About The Council of Academic Hospitals of Ontario

The Council of Academic Hospitals of Ontario (CAHO) represents Ontario’s 24 research hospitals that play a unique and vital role in the province’s health care system. Collectively, we provide advanced patient care services, train the next generation of health care professionals, and conduct leading-edge research to discover tomorrow’s care today. As connectors in the system, we create capacity and generate a healthier, wealthier, smarter Ontario. For more information, visit www.caho-hospitals.com.