Sleep loss and sleep disorders have profound impacts not only on individuals, but on society, and Madhura Lotlikar aims to do something about it.
Despite the growing body of research highlighting the negative effects of poor sleep, Lotlikar, a PhD Candidate in Neuroscience at McGill, was struck by the lack of meaningful action.
“There is so much evidence, but so little application,” she said. “Where was the translation of this research, the public engagement, the government policies?”
Lotlikar realized that the personal stories of people who face sleep challenges were one of the missing pieces of the puzzle. “We need to listen to the people who are affected to create changes intended for them,” said Lotlikar. While there are small initiatives for specific conditions like narcolepsy, a unified, broad-based effort to address sleep health had yet to materialize.
The result is the Share Your Sleep Story project, which connects research data with the personal stories of people facing sleep challenges, be it as a result of their profession, life events, social factors or sleep disorders.
Share Your Sleep Story recently received funding from the Réseau Québécois de recherche sur le sommeil, an interdisciplinary network of researchers, health-care workers and others working in sleep medicine. Collaborators include The Neuro and the Canadian Sleep Society which hosts its stories.
“This project isn’t a research study. It’s focused on public engagement,” said Lotlikar. “We aren’t diagnosing sleep issues, but through interviews, we’ve seen first-hand how night shift workers and others with diagnosed sleep disorders face significant challenges every day.”
The impacts of sleep loss
When Lotlikar first began her work in sleep research three and a half years ago, she quickly recognized the profound impact of sleep loss and disorders, not only on individuals, but also on society, for example, because of lost productivity.
“Sleep is a central element of our life. Not only does a lack of it affect your mental and physical well-being and productivity, but it increases your risk of dementia, Alzheimer’s disease, cardiovascular disease, injuries, diabetes and other chronic medical conditions,” said Lotlikar. “Anything that improves your sleep health, can improve the quality of your life.”
The stories shared to Share Your Sleep Story are meant not only to raise awareness about the varied impacts of sleep loss on individuals’ lives or eliminate the stigma, but to encourage policymakers to recognize sleep as a crucial factor in health outcomes. Lotlikar said she and her team want to turn these personal narratives into action by linking them to existing research and policy successes.
The team will generate policy briefs, op-eds and other materials aimed at bringing sleep issues to the forefront of public discourse.
“By connecting data with personal stories, we aim to inspire change,” said Lotlikar. “We ask storytellers what changes – at the institutional or governmental level – could help them manage their sleep issues better and live more fulfilling lives. We aim to amplify their voices.”
These potential changes range from abolishing daylight savings time and expanding sleep health education in medical curriculums and clinical settings, to advocating for RAMQ reimbursement for evidence-based insomnia treatments like Cognitive Behavioral Therapy for Insomnia.
Not all sleepers are the same
While most sleep studies focus on general guidelines – such as the current recommendation for adults to sleep seven to nine hours per night – there is growing recognition that sleep needs vary significantly from person to person.
Sleeping less than seven hours doesn’t automatically signal a sleep disorder, nor does it inevitably lead to negative consequences. However, conditions like circadian rhythm disorders or sleep apnea highlight how sleep issues are not always obvious or easily categorized.
This reality is particularly evident among people whose work schedules don’t align with traditional sleep patterns. Night-shift workers, for example, face significant challenges in getting restorative sleep. Maria, an occupational therapist featured on Share Your Sleep Story, discussed her own sleep struggles as well as those of her patients in rehabilitation care. While sleep is vital for recovery and mental health, there’s no consensus on how rehabilitation professionals should assess or address sleep issues.
Lotlikar sees this as a gap in both research and practice that needs urgent attention.
“This initiative may inspire future research questions,” said Lotlikar. “For example, why isn’t sleep research being implemented in rehabilitation centres despite abundant evidence? More importantly, what can be done to change this?”
Follow the social media pages of the Share Your Sleep Story initiative to read one sleep story per month: LinkedIn, Instagram, X and Facebook.
If you would like to share your sleep story, contact Madhura Lotlikar at madhura.lotlikar@mail.mcgill.ca