Thank you to all who attended and participated in the CNTN Spring Virtual Research Symposium on April 21.
Dr. Maoliosa Donald and patient partner Dwight Sparkes presented their project, “My Kidneys My Health website: developed by patients for patients”
Dr. Melissa Schorr presented her proposal, “Diuretic use in patients with residual renal function on hemodialysis”
Dr. Kristin Clemens presented her proposal, “Denosumab for the prevention of fragility fractures in hemodialysis: pilot study for an innovative, randomized-controlled trial, embedded in routine care (PREFERRED-1)”
Presentations were followed by an engaging question and answer period.
Learning Objectives were:
To learn about planned and ongoing Canadian trials
To provide meaningful feedback to investigators
To build successful collaborations between investigators and patient partners
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.
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.