Found in Translation: The Power of ‘Lived Experience’
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“Patients need to be involved in all aspects of research,” reads one of the guiding principles of the Strategy for Patient-Oriented Research (SPOR). All SPOR partners are encouraged to “… bring [in] the collective voice of specific, affected communities” and to create tools collaboratively, reaching the “… common goal of timely implementation of quality research”. What does this look like in practice?
On Wednesday, November 07, 2018, I had the opportunity to attend the first Annual General Meeting (AGM) of the SPOR Evidence Alliance in Toronto, a Canada-wide network of healthcare providers, patients, policy makers and researchers dedicated to informed decision making in health and/or healthcare. The Evidence Alliance, led by Andrea Tricco, PhD, is geared toward a rapidly learning healthcare system, “… where patients receive the right care at the right time, by supporting access to high-quality information…”. To drive their patient-oriented initiative, the Evidence Alliance includes patients in key governance structures and all its decision-making processes.
The AGM focused on discussing the Evidence Alliance’s progress to date and strategizing their next steps, growth and sustainability. At the core of operations of the Evidence Alliance is the response to knowledge user needs in knowledge synthesis, clinical practice guideline development, patient-oriented research, and knowledge translation. The AGM provided a platform to discuss how to facilitate a meaningful patient engagement in the research process, highlighting areas research teams and Evidence Alliance themselves can improve.
In my work with the National Initiative for the Care of the Elderly (NICE), a Toronto-based knowledge translation network dedicated to the care of older adults, we are currently in the process of enhancing our report on the opioid crisis in seniors, launched in August 2018, to contain lived experience. This inclusion of patient/consumer voices will ensure that policy and practice recommendations meet the needs of older adults, with potential treatment strategies tailored to this specific population in light of metabolic differences and drug interactions as part of aging. Including lived experience puts the patient voice at the forefront of the research.
Disclaimer: The author is a trainee with the SPOR Evidence Alliance, member of its Knowledge Translation Committee and chairs the End-of-Life Issues Theme Team for NICE.