(This blog posting is courtesy of the Kidney Cancer Research Network of Canada (KCRNC), a national research group that is uniquely focused on kidney cancer. KCRNC is jointly supported by our charity, Kidney Cancer Canada, along with the Canadian Institutes of Health Research (CIHR) and the Kidney Foundation of Canada.)
What are the Research Priorities of Canadian Kidney Cancer Patients, Caregivers and Clinicians?
We Need Your Input!
As a patient or caregiver who has had personal experience with kidney cancer, you are uniquely qualified to provide input to the Kidney Cancer Research Network of Canada. Please take a moment to provide your input. We appreciate your time and your valuable contribution to moving kidney cancer research forward. Thank you.
Why Does Priority Setting in Kidney Cancer Research Matter?
As you may be aware, kidney cancer is relatively under-researched in Canada and internationally. Also, the views of patients, caregivers and healthcare providers about what should be researched may not be reflected in the decisions about what is researched. Given scarce research resources, the prioritization of research studies of kidney cancer is even more important.
The Kidney Cancer Research Network of Canada has now established a priority setting partnership for people with a diagnosis of kidney cancer. Our goal is to identify the top priorities for kidney cancer research. This is an important step in raising awareness of the issues and then in helping us secure the funds to start tackling them.
What is Involved in a Priority Setting Partnership?
This partnership follows guidelines set out by the James Lind Alliance, a not-for-profit organization in the UK. The underlying principle is to provide an equal voice to patients, their caregivers and the health professionals who care for them in setting research priorities about the disease that they live with every day.
As a first step, we have developed a survey to gather input. This survey is available online at www.kidneycancersurvey.ca until November 30, 2014 for you to complete.
The responses will then be sifted and sorted, a process which will be overseen by a steering group of patients, caregivers and healthcare providers. In this way about 30-40 unanswered questions will be taken forward for final consideration.
The final selection of the top 10 priorities will take place at a workshop in February 2015. After that, the findings will be distributed to our key stakeholders (patients/caregivers and their healthcare providers) and beyond.
What Can You Do?
We are working hard to ensure our survey reaches all those affected by kidney cancer. Please help us to do this by letting others know about this important project so that we hear the views of as many patients, caregivers and health professionals with experience of kidney cancer as possible. Please help us spread the message.
If you are interested in finding out more about this work or participating in some way, please visit our website – www.kidneycancersurvey.ca .
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