Insights on Managing Pain in Children and Teens (IMPACT)

Poor pain management after pediatric surgery remains a critical concern despite efforts in providing care information at hospital discharge. A recent audit of daycare surgical procedures at BCCH highlighted that children experience a significant amount of preventable pain at home in the days following surgery. The goal of this project is to observe the clinical encounters at discharge and identify areas for improvement in the communication of pain management information for families who have children in postoperative care. These pilot data will be leveraged for the co-design of evidence-based resources for pain management communication. Results from this project will fill an essential gap in our understanding of the lived experiences of pediatric postoperative pain management.

Funders: Michael Smith Foundation for Health Research, BC Children's Hospital Research Institute Evidence to Innovation Theme​

---

Program Evaluation of the First Link® Dementia Support Service in British Columbia

The First Link® dementia support evaluation project is aimed at improving support for British Columbians affected by dementia. The goal of this mixed-methods evaluation project is to identify the key strengths and areas for improvement of the program from the perspective of various stakeholders, including persons living with dementia, their care partners, and health care professionals. The results from this evaluation will inform the services offered and will help ensure that the Society is providing the best support and education possible to the dementia community in British Columbia.

Funder: The Alzheimer Society of B.C.

---

Social Co-creation of Robotic Assistive Technologies (SOCRATES)​

Improving independence and quality of life for older adults can be realized by complementing human care with robotic assistive technologies. Social robots, defined as robots with a goal of providing assistance to human users through social interaction, are promising in their potential to support aging in place, and promote the cognitive health of older adults. A recent systematic review of controlled trials analyzing the impact of social robots on the well-being of older adults suggests that social robots can improve nine quality of life outcomes, including reducing loneliness, stress and anxiety. Despite these benefits, the adoption of robotics in older adult populations remains low due to concerns about technical readiness, user benefits, and immediate and long-term ethical and social impacts. The goal of the SOCRATES project is to create and test a holistic approach to social robot development that addresses key adoption barriers using an interdisciplinary, co-design methodology. Through two research aims, the SOCRATES project will involve the development of an affective social robot solutions specifically tailored to older adult needs and emotions, and will yield an evidence-based blueprint for effective and ethical technology co-creation. An innovative knowledge exchange platform will build on these deliverables and serve to ignite a conversation about the future of social robotics.

Funder: Canada's Tri-Council Agencies (SSHRC)

---

Health Advice in a Digital World: Helpful or Harmful? 

Over 80% of adult Internet users report seeking health information online and through social media applications. As the population gets older and the prevalence of dementia increases, online health information about aging and dementia holds the potential to significantly impact the health of our aging demographic. However, little is known about how information pertaining to age-associated diseases is disseminated and shared online, and about the quality and value of this information. To fill these knowledge gaps, we are using data mining, content analysis and expert panel reviews to empirically examine online the validity and ethics of online resources about age-associated diseases. To date, we have shown that:

1. Many online self-diagnostic tools for Alzheimer disease do not provide meaningful information about the disease and may be harmful due to important ethical breaches such as conflict of interest or fraudulent practices;
2. Social media platforms such as Twitter act as key channels for the timely dissemination of research findings and allow for interactions between a large variety of stakeholders, including health care professionals, researchers and the patient community;
3. Online health information about dementia is highly variable in quality, with one in five websites providing information intended to sell a product.​​

Taken together, our findings call for an increased awareness of the potential benefits and harms of online resources to ensure older adults are equipped to make the best possible decisions about their brain health. In line with this call, we have delivered seven public outreach presentations and five media interviews on the topic of online health in the last year.

Funding Agencies: Canadian Institutes for Health Research, Canadian Dementia Knowledge Translation Network, Foundation on Ethics and Technology

---

Fueling Hope: Biotechnologies for the Brain on Social Media 

The development of novel biotechnologies for the brain, such as stem cells, gene therapy and optogenetics, are fueling hopes of treating a wide range of disorders of the central nervous system. While ethical concerns about these types of treatments have been articulated within the academic community, little is known about views and opinions of other stakeholder groups. To address this gap, we utilized social media platforms such as the Q&A site Yahoo! Answers and Twitter to investigate the type of information public users are seeking about these novel biotechnologies, and the hopes and concerns they express. Our results reveal high expectations for gene therapy and stem cells that range from cures for genetic and non-genetic diseases to pre- and postnatal enhancement of physiological attributes. Ethics questions are commonly expressed as fears about the impact of biotechnologies for the brain on self and society, and concerns about “mind control” with optogenetics. Overall, the findings highlight the powerful role of social media as a rich resource for research into attitudes toward biomedicine, and as platform for knowledge exchange and public engagement for topics relating to health and disease. To put these conclusions into practice, we have issued a set of recommendations to promote ethical communication about biotechnology in the research community (Robillard JM, 2015, Expert Opinion on Biological Therapy).

Funding Agencies: Genome BC, Canadian Institutes for Health Research