Earlier this year, a multidisciplinary team of 9 patients, 74 clinicians/health administrators, 5 policymakers, and 43 researchers, partnering across 13 Universities, 7 SPOR-funded entities, 6 health data organizations, 4 provincial renal agencies, 3 health charities, and 3 companies received a renewal of a CIHR SPOR Innovative Clinical Trial Multi-Year Grant.
CNTN will be supporting the activities of this grant in several ways, including posting new resources to build capacity and promote pragmatic trials in Canada.
Recently, as a part of this grant, Dr. Amit Garg, along with Drs. Merrick Zwarenstein and Ahmed Al-Jaishi spoke about pragmatic trials at the NIH Collaboratory’s Rethinking Clinical Trials Grand Rounds. During their presentation, they discussed some of the defining differences between pragmatic and explanatory trials using an ongoing hemodialysis temperature trial (MyTEMP) as an example.
Read about the MyTEMP trial:
View the presentation:
The International Society of Nephrology – Advancing Clinicial Trials (ISN-ACT) group has developed a Clinical Trials Toolkit as a resource for nephrologists and researchers that provides guidance for each stage of a clinical trial from design and development to analysis and reporting. You can find the toolkit at https://www.theisn.org/isn-act-toolkit.
The group that developed the toolkit will be hosting a webinar on Nov 17 to register, visit here
Learning objectives of the webinar:
1. Learn about trial design, study conduct, data management, data analysis, and publication
2. Carry out meaningful and robust clinical trials or become involved as a trial site
3. Understand how the Clinical Trials Toolkit can help you achieve your research goals
Patient engagement is a relatively new way of conducting research in Canada and many researchers are probably still wondering how to do it well. Dr. Simon Hatcher and his team at the Ottawa Hospital developed a graphic novel style tip sheet, “Top 10 Recommendations for Researchers Working with Lived Experience Partners“.
The comic was created by people with lived experience of suicide at the REFLECT research forum which brought together patients and caregivers as well as suicide prevention researchers, trainees and policy-makers.
The top 10 recommendations are:
- Use common and clear language
- Allow for customization to patient partner’s needs. Be flexible.
- Be authentic in the approach to patient-oriented research. Avoid tokenism.
- Define roles. Invite and acknowledge everyone’s contributions.
- Balance power dynamics.
- Invite patient partners to do more than what they are recruited for.
- Compensate fairly and as a matter of course. Reimburse expenses.
- Build relationships through honesty and trust.
- Ensure governance through integrity and accountability.
- Establish and encourage continuous communication and feedback.
A 3-part series of webinars was delivered this Spring as part of the Capacity Building committee’s commitment to encourage patient to bring their research ideas to CNTN meetings. The 3 webinar topics included:
- What is research? – Offered an overview of what the term research means, the different types of studies and why patients should come up with research questions
- How to develop a research question – Offered a collection of tips to help patient partners better define their idea
- Presenting an idea – Offered tips on how to write an elevator pitch and what presenting the research idea at a CNTN meeting would require
These webinars are available for viewing below. If you are a patient partners with a research idea that you would like to propose to the network, please email it to Alicia at firstname.lastname@example.org.
Webinar #1 – What is research?
Webinar #2 – How to develop a research question
Webinar #3 – Presenting an idea