National Core for Neuroethics – Building Bridges of Information between Researchers and Patients

A17 Neuroethic LP

 

The way we understand, treat, and live with disorders like Alzheimer disease, Parkinson disease, and spinal cord injury is evolving at an impressive rate. At the same time, the web is transforming how we understand the latest neuroscience research – with the rise of social media like Twitter, Facebook, and online discussion forums comes new challenges in how we share information and what we believe about medical research. How should researchers and clinicians adapt to this new reality, where as many as 80 per cent of internet users seek health information and diagnoses online? How can patients and their families find reliable, credible information about brain health online and avoid the harms of predatory and fraudulent organizations?

At UBC’s National Core for Neuroethics and the Djavad Mowafaghian Centre for Brain Health, Dr. Julie Robillard, Assistant Professor, is working hard to answer these questions and more. She leads a research program at the intersection of aging, ethics, and technology, and has developed innovative techniques for the analysis of brain health and social media. Dr. Robillard is actively investigating how we learn about brain health, especially on digital media, and how computers and mobile devices are changing how we make decisions about our health and interact with the health care system. Her efforts promise to improve how basic science and clinical research are translated to patients and the public. You can directly support the research by  making a donation.

Dr. Robillard’s research has been featured widely in prominent news outlets including the Wall Street Journal and the National Post, as well as in high impact publications and at international conferences. Two of her recent internationally recognized findings include that:

  • Most online tests for Alzheimer’s disease do not provide meaningful information about the disease and may be harmful as they do not adhere to important ethical norms for medical interventions.
  • When asked about their biggest concern with new biotechnologies for the brain, most people express worries about not receiving all the appropriate information about the treatment, rather than worries about potential side effects.

These investigations are critical to improving the accessibility and the quality of care and health information across Canada and beyond. Yet, Dr. Robillard’s research at UBC has met a funding shortfall.

Your support is urgently needed to empower Dr. Robillard’s research in science communication and knowledge translation in her role as a UBC Assistant Professor. The UBC Faculty of Medicine is seeking philanthropic support totalling $400,000 over the next three years to help protect Dr. Robillard’s important research and improve patient care. Generous support of $25,000 has already been given by a conscientious community member, and we need your help to secure the remaining resources for this critical position.

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