By Talia Gutman
I am researcher at the Centre for Kidney Research in Westmead, and my work focuses on improving the ways in which we involve patients as partners in our research.
It has become clear in recent years that the priorities of researchers and clinicians are not always consistent with the priorities of patients and their families. It is also now widely recognised that patients and caregivers have vast expertise, knowledge and skills, and that harnessing these appropriately can lead to better clinical outcomes. Tapping into the collective wisdom of patients and their families, and realigning research efforts to more closely align with their perspectives, will also ultimately ensure that research is useful for treatment decision-making.
But just because we know we should be doing something, that doesn’t mean that we know how to do it well. We consistently hear from researchers that it is difficult to find patients to be involved in their research projects, and from patients that it is difficult to find opportunities to get involved.
Together with the Better Evidence and Translation in Chronic Kidney Disease program (BEAT-CKD), the Kidney Health Australia – Caring for Australasians with Renal Impairment (KHA-CARI) guidelines and the Standardised Outcomes in Nephrology (SONG) Initiative, I have conducted workshops, focus groups and interviews with patients, caregivers and health professionals to find out how they want to be involved, and the ways in which they can be best supported to contribute in a meaningful way. My goal is to find out what works well in real world settings, and to summarise this in a practical framework for researchers and patients for effective engagement and involvement.
What we’ve learnt so far about how patients want to be involved in research:
Also, as part of this work we have established a Consumer Advisory Board for BEAT-CKD. A group of 40 patients and caregivers now give advice and feedback across the spectrum of research activities. They also helped to design and plan patient research programs at this year’s Australian and New Zealand Society of Nephrology’s annual scientific meeting.
If you are interested in getting involved in research, or would like to know more, please email me – email@example.com
Wishing everyone all the best for 2019.