There has been a trend over the last few years to focus on patients in healthcare. Setting aside the evident irony of the obvious necessity of including the patient in healthcare, there are some subtleties for innovation worth considering.
The first is why? Why focus on the patient? There are other ways to approach innovation. You can focus on the system or services, or products. Etc., Now many of these are by no means mutually exclusive or entirely distinct, but the approach—how you frame your problem and the space in which you are trying to problem-solve—will invariably have an influence on the processes and on your endpoints and outcomes. The mindset with which you approach a problem will guide your thinking and help determine where you end up. So if you start thinking about a healthcare problem from a systems perspective, you will be looking for systemic issues to solve and your interventions will likely involve changes to the system that will try to address the space you define. This may or may not actually impact patient care. For example, a systemic change may result in significant economic savings to the system, but these benefits may not actually be seen by patients—savings may actually be converted as profit-taking or, in the case of public systems, put into other priorities of the system.
Another important nuance is the understanding that even when the “patient” is prioritized in the process—that is, placed as the subject or beneficiary of the innovation—it does not mean that the patient is the agent of the resulting intervention. Improving patient care or the patient experience may involve other stakeholders as objects or agents of a particular innovation. Sometimes changing what a caregiver or a clinician does is by far the best way to improve the patient experience. The point here is that placing the patient at the center of translational thinking does not mean that patients are the only means to the desired state. In a patient-centered approach, however, it should mean, that patients are the end beneficiaries of the innovation, that patient care or the quality of the patient experience is included as a central measure of success for the intervention.
Since the intension of Translational Thinking is, in principle, to have tangible impact on human health, prioritizing benefits for patients as an outcome measure of the innovation process is a significant frame-of-mind for approaching the process of mobilizing knowledge for social and economic benefit.
The COVID-19 pandemic has brought with it unprecedented challenges. We, at the TRP, have adapted swiftly to ensure that the program continues to be delivered smoothly. This is a personal memoir by our sessional instructor Christopher Klinger, shedding light on how COVID-19 has affected knowledge translation.
Christopher A. Klinger, TRP Translator & Sessional Instructor, May 2020
Yes, these ARE difficult times –
and while the focus needs to remain on (health) care/service provision at the frontlines of the COVID-19 crisis, the Translational Research Program team itself immediately rose to the challenge. Under the strong leadership of Drs. Ferenbok and Foty, it almost seamlessly created a new, online environment for knowledge facilitation and transfer alongside (community) service, empowering student-led initiatives such as Project Northern Lights.
With the LMP 2320H Methods in Practices and Contexts course and LMP 2310E Student-led Work and Research Module (SWARM) module successfully moved online for the remainder of the Winter 2020 term, my focus shifted to knowledge translation for one of the ongoing projects conducted in my other role as Chair of the National Initiative for the Care of the Elderly’s (NICE) End-of-Life Issues Theme Team: A scoping review of the literature toward knowledge gaps regarding informal caregiving at the end of life.
Commissioned by the Quality End-of-Life Care Coalition of Canada (QELCCC) as the largest stakeholder coalition in the field, the actual review had been completed with second-year TRP students Andrew Wan, Ankita and Zoey Li. Strategies/distribution channels for knowledge translation had to be adapted, and posters and presentation materials adjusted for the COVID-19 landscape to be created in a timely fashion.
In mid-March 2020, Andrew Wan co-presented on research findings at a caregiving webinar hosted by the Canadian Hospice Palliative Care Association (CHPCA) and a knowledge synthesis piece was pre-recorded for the Canadian Home Care Association (CHCA) / Carers Canada as part of National Carers Day activities (April 07, 2020). It is now available for download as part of the Caregiver Resource Expo at: https://www.carerscanada.ca/ncd-empowering-caregivers/.
Furthermore, with the Ontario Hospice Palliative Care Conference going virtual, an online presentation was prepared for oral presentation at the end of April 2020 and a scientific poster for viewing via the conference website was designed.
The scoping review itself, following Arksey and O’Malley’s framework, identified 33 peer-reviewed and grey literature sources for inclusion and specifically acknowledged informal caregivers as important members of the hospice palliative care team. In line with the TRP’s mission to drive change, a better understanding of the physical, psycho-social and financial challenges faced by informal caregivers was gained and will inform and advance future practice, policy, and research – i.e., moving swiftly from the current to the future desired state via the Toronto Translational Framework (TTF).
Next steps include the preparation of a manuscript for publication in collaboration with TRP Translator Dr. Raza Mirza (), the development of an infographic and the creation of an evidence-based caregiver tool to be distributed as part of the National Initiative for the Care of the Elderly’s catalogue of tools in both a hard copy and electronic format. It is hoped that these multi-channel activities (as emphasized during the LMP 2310E Knowledge Translation and the Community module, co-facilitated with Dr. Mirza) will help to bridge the knowledge gap and enable caregiver-centric innovations that improve medicine, health, and care during COVID-19 and well beyond.
For the TRP students’ perspective on the work (Andrew Wan and Zoey Li), please also visit https://twitter.com/hashtag/TRPHeroes?src=hashtag_click.
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Christopher A. Klinger, Ph.D. is a Sessional Instructor I with the Translational Research Program (TRP) at the University of Toronto’s Faculty of Medicine, Department of Laboratory Medicine and Pathobiology, and Research Scientist with Pallium Canada – a national non-profit evidence-based organization focused on building professional and community capacity to help improve the quality and accessibility of palliative care. His research interests are in health systems and policy, with a focus on hospice palliative/end-of-life care. He also chairs the National Initiative for the Care of the Elderly’s (NICE) End-of-Life Issues Theme Team, a knowledge transfer network dedicated to enhancing the care of older adults both in Canada and abroad, and the Quality End-of-Life Care Coalition of Canada’s (QELCCC) Research and Knowledge Translation Committee, a group of national stakeholder organizations concerned about quality end-of-life care. Furthermore, Christopher is a frequent presenter at aging, hospice palliative care, and public administration conferences.
Most of the world is aware and has begun to grow tired of the extreme measures being taken to fight the COVID-19 global pandemic. Protests to loosen restrictions and demands for a return to normalcy dominate public and private debates. But significantly fewer extreme measures and attention are being paid to yet another pandemic we’ve been facing.
This other pandemic has been going on for so long that it has really become part of the background context of our daily lives. It has permeated every aspect of national and global societies, but it is usually consigned (for the most part) to buried stories, outros, or footnotes of the mainstream media. Yet its spread, the resulting devastation of our communities, and its death toll continue to rise—insidiously ignored or maliciously rationalized.
Statements that there are “good people” on both sides when one side is trying to defend individual rights while the other uses violence and spreads intolerance are so commonplace on the world stage these days, that they too represent a pandemic. A pandemic of intolerance, racism, and ignorance. A pandemic of harmful, selfish and uninformed ideologies fueled by self-serving agents of misinformation and duplicity.
Racism and intolerance are a pandemic that we have faced for decades, no, centuries and it only seems to be flaring up again in the current climate. But the trouble is that we have reached a level of saturation and indifference where, as a global community, we seem ready to ignore this pandemic and ignore its cost in human lives, in favour of returning to normal, to the status quo of caring about our own individual lives.
Unlike with COVID-19, rarely do we talk about the impact of intolerance on humanity, on society, on progress, and even the economy—these seem too abstract and too distant when compared with social distancing and isolation.
Innovation, the creation of new and better processes, products, and services depends on cultivating and nurturing new ideas. Diversity brings together multiple perspectives and ideas and strengthens the quality and impact of education, research, and overall human progress. Racism and ignorance stifle different perspectives and new ideas—they stifle humanity and progress!
At the TRP, we aim to provide a safe and positive space for creativity and innovation. We aim to encourage diversity, multiple perspectives and are devoted to fighting intolerance in all its forms. We aim to attract and retain diverse and excellent students, faculty members, and trainees, and to foster flexible working conditions that accommodate personal circumstances and create an inclusive environment. We support those peacefully fighting anti-Black racism and racism as a whole. It is our collective responsibility to build an equitable, diverse, and inclusive environments where students and faculty continue to seek opportunities and partnerships that remain true to these goals while working diligently to stand in the way of those who oppose these ideals, spread hate and division, and stand in the way of creating a healthy human community.
TRP Program Director,
June, 1st 2020
Written by: Gabriella Chan
Advancements in technology and the dawn of the internet of things have spawned new business models and entire new ecosystems based on collection, use, and access to data. Big data analytics tools have the ability to associate information in unprecedented and at times invasive ways. We are barraged by relentless demands to share information in the name of efficiency and seamless personalized service. Our personal information is being grabbed with and without our knowledge or consent. We have privacy legislation that intends to hold those who take and use our personal information accountable, but the system simply was not designed to withstand this attack – it struggles to keep up with the breakneck pace of information flow in the technological revolution.
Does anyone read the privacy policies of every site they visit? Can any of us truly say that we know who has access to our personal information and how they are using it because we consented to its collection and use? And with that, in this day and age, is our consent ever truly informed and meaningful? It should be.
The principle of consent forms the bedrock of Canada’s federal privacy legislation, the Personal Information Protection and Electronic Documents Act (“PIPEDA”). Consent is the way by which we protect our privacy by exercising control over how much of our personal information we choose to share with others. Organizations subject to PIPEDA may not collect, use, or disclose our personal information in the reasonable course of their business without first obtaining our consent, either before or at the time they collect our personal information. If an organization wishes to use our personal information that it already collected for a different purpose, it must seek our consent again.
Recognizing that consent must strike a balance between preserving an our autonomy over our personal information and an organization’s need to access some of our personal information to conduct business in the modern age, in 2016, as part of its strategic priority work on the Economics of Privacy, the Office of the Privacy Commissioner of Canada (the “OPCC”) set out to explore potential enhancements to consent models. That work laid the foundation for the OPCC’s release in May 2018 of its Guidelines for Obtaining Meaningful Consent (the “Guidelines”), which it began to apply on January 1, 2019.
The Guidelines are predicated on seven guiding principles for meaningful consent that serve as a framework on which organizations are expected to layer innovative and creative solutions to develop a contextual consent process that is compliant with privacy law and that:
- Promotes easy access to clear explanations of why a particular piece of personal information is being collected, how it will be used, to whom it will be disclosed, and whether its disclosure and use may pose significant harm to the individual;
- Provides information in a manner that allows individuals to control the level of detail they wish to see, possibly through a layered approach, rather than being confronted with the digital equivalent of a hard copy of that information;
- Recognize that consent must be clear to be meaningful and therefore provide clear consent mechanisms that allow individuals to give or withhold consent as well as the ability to re-consider whether they wish to maintain or withdraw the consent they may have provided at any previous point;
- Use a variety of interactive communication strategies such as “just-in-time” notices (meaning notices explaining why the information is needed that appear near the space where the user would input the information) or interactive walkthroughs of privacy settings, videos explaining key concepts, and/or infographics and similar visual tools. The Guidelines call for particular attention to mobile interfaces, where given the limited screen real-estate, an individual’s attention should be focused at particular decision points in the user experience where people are likely to pay attention and need guidance the most. Refer to the mobile apps guidance when designing the mobile consent experience;
- Walks the path of its customers to ensure that the privacy content is accessible from all types of electronic devices, uses clear language at a level of comprehension suitable to a diverse audience, is user-friendly, and is tailored to the product or service being offered. Organizations are even encouraged to engage interaction/user experience (UI/UX) designers in the development of the consent process;
- Anticipate that the complexity of information flows will give rise to follow-up questions and address these questions by developing and regularly updating FAQs and implementing technologies such as chatbots;
- Be accountable and be ready to demonstrate that legislation-compliant processes to obtain consent from individuals are in place and that the organization has considered and has implemented the principles in the Guidelines. The OPCC’s expectation of an organization’s compliance and accountability and the steps it has taken to demonstrate them will consider the size of the organization and the amount and type of personal information it collects, uses or discloses.
Despite the Supreme Court of Canada’s proclamation that “Privacy is at the heart of liberty in a modern state…Grounded in man’s physical and moral autonomy, privacy is essential for the well-being of the individual,” the impetus to protect one’s privacy in the technological age is sadly waning because, according to some, “(u)nderstanding how our personal information is being used in this environment is becoming increasingly difficult if not impossible for the average person. Thus, expecting individuals to take an active role in deciding how their personal information is used in all instances is increasingly unrealistic.”
Despite that fatalistic sentiment, making the consent process more transparent, meaningful, and accessible by implementing the seven Guidelines, coupled with embedding privacy at all levels of education will make great strides toward stemming the erosion of our privacy rights.
While these guidelines refer to personal information, their application to the collection and use of personal health information – the distinctly sensitive subset of personal information governed by Personal Health Information Protection Act (“PHIPA”) – would be a welcome development.
 Center for Information Policy Leadership. “The Role of Enhanced Accountability in Creating a Sustainable Data-driven Economy and Information Society.” Discussion draft. October 21, 2015.
Image by Catkin from Pixabay
Banner Credit: Zoya Retiwalla for the TRP
Artificial Intelligence (AI), more commonly known as machine learning is the next holy grail of technology. Its advent is bringing about a paradigm shift in our lives. Dr. Gabriella Chan, our inspiring faculty member discusses AI and its numerous facets.
“AI ‘outperforms’ doctors diagnosing breast cancer” read the headline on BBC’s Health page just two days into this new decade. Highlining a paper published in Nature, the article described how an Artificial Intelligence (“AI”) model trained on 29,000 X-ray images bested 6 radiologists in reading mammograms.
Andrew Ng, CEO of Landing AI and deeplearning.ai refers to AI as “the new electricity.” While noting that virtually all industries will be transformed by AI, he sees AI’s biggest and most imminent untapped opportunities in agriculture, healthcare, and manufacturing.
Most references to AI, including the model in the Nature study featured by the BBC article, are directed to deep learning algorithms that train on structured data. But for Andrew Ng, the holy grail of AI is “effective unsupervised learning,” meaning algorithms that learning organically, without labelled data.
As we await the dawning of the AI holy grail, meet DARBUS (Device for the Autonomous Bootstrapping of Unified Sentience), and its creator, Dr. Stephen Thaler, from the University of Surrey in the United Kingdom (UK). Dubbed a “Creativity Machine” by its inventor, DARBUS is a patented neural network trained on general information (NN1). NN1 generates novel ideas which are then monitored and assessed by a second “critic” neural net (NN2) for their novelty, utility, and value.Dr. Ryan Abbott likens interactions as those between NN1 and NN2 to the human brain’s cognitive circuit embodied by the thalamocortical loop. The Artificial Inventor Project, headed by Dr. Thaler, field a number of patent applications through the Patent Cooperation treaty (PCT), the United States Patent and Trademark Office (USPTO), European Patent Office (EPO), and United Kingdom Intellectual Property Office (UKIPO) for inventions created by DARBUS. In one instance, DARBUS invented an environmentally-friendly fractal food container and in another a device for attracting enhanced attention with applications in search-and-rescue operations. Both patent applications named DARBUS as the sole inventor and Dr. Thaler as the assignee (owner).
In early December 2019, the UKIPO refused both applications explaining that by naming the machine as an inventor, the application does not meet the inventor identification requirement of the UK Patents Act. Although not cited by the examiner, but brought to his attention by Dr. Thaler’s attorney as part of his argument in support of a sole AI inventor, the recently amended Paragraph 3.05 of the Formalities Manual also states that:
“Where the stated inventor is an ‘AI Inventor’, the Formalities Examiner [should]request a replacement. An ‘AI Inventor’ is not acceptable as this does not identify ‘a person’ which is required by law. The consequence of failing to supply this is that the application is taken to be withdrawn under s.13(2)”. (Emphasis is mine)
In late December 2019, the EPO also refused the applications, noting on its website that it had rejected the applications because the inventor designated in the applications is not human. A more fulsome explanation from the EPO may be forthcoming this month.
At law, a reference to a “person” may mean a natural person (i.e. a human) or an artificial person (i.e. a body corporate, partnership, government body, etc.) or both. To avoid the ambiguity of “person” when referring to a human, lawyers are careful to use “individual”. Since patents were intended to issue to natural persons to prevent corporate inventorship, an assumption has always been made that when patent laws do refer to a “person” (as in the above quote) or to an “individual”, the target is a human. The academic debate about whether a non-human inventor or creator can be classified as an individual or a person, particularly under patent and copyright law, has been raging for some time. Listing DARBUS as a sole inventor laid the debate on the doorstep of patent offices.
The need for policy and then legislative action in the face of a technological tsunami, which our current IP laws were not designed to withstand, is palpable in these debates. Change is inevitable. In fact, just weeks after the UKIPO’s rejection and just 7 days prior to the EPO’s rejection of the DARBUS applications, the World Intellectual Property Office (WIPO) launched a public consultation on AI and Intellectual Property (IP) policy. Comments are due by February 14, 2020.
The consultation paper identifies and invites discussion on 7 IP policy questions and issues for AI-generated IP. In summary:
Issue 1: Inventorship and Ownership:
- Should the law permit or require that an AI application be named as the [sole or joint] inventor or should it require that a human being be named as the inventor?
- Should inventions that have been generated autonomously by an AI application be eligible for patent protection?
Issue 2: Patentable Subject Matter and Patentability Guidelines
- Should specific provisions be introduced for inventions assisted [or created solely] by AI or should such inventions be treated as other computer-assisted inventions are treated?
Issue 3: Inventive Step or Non-Obviousness
- Should the standard of a person skilled in the art be maintained where the invention is autonomously generated by an AI application or should that standard be replaced by an algorithm trained with data from a designated field of art?
- What implications will have an AI replacing a person skilled in the art have on the determination of the prior art base?
- Should AI-generated content qualify as prior art?
Issue 4: Disclosure [assuming one would seek to patent the AI rather than keeping it confidential]
- In the case of machine learning, where the algorithm changes over time with access to data, is the disclosure of the initial algorithm sufficient?
- Should the data use to train an algorithm to be disclosed or described in the patent application?
- Should the human expertise used to select data and to train the algorithm be disclosed?
Issue 5: General Policy Considerations for the Patent System
- Should a separate system of IP rights for AI-generated inventions be developed to adjust innovation incentives for AI?
Issue 6: Authorship and Ownership
- Should copyright be attributed to original literary and artistic works that are autonomously generated by AI or should a human creator be required? In whom should copyright vest?
Issue 7: Infringement and Exceptions
- Should the use of copyrighted data and works without authorization for machine learning constitute an infringement of copyright?
- How would the unauthorized use of data subsisting in-copyright works for machine learning be detected and enforced, when a large number of copyright works are created by AI?
Keeping in mind that IP law is territorial and only humans and legal entities can own property, including intellectual property, these discussion issues are sure to spark meaningful, and hopefully impactful, debate. The IP and AI community will await the results of this consultation with bated breath.
In the meantime, for an in-depth argument in support of the equivalency of artificial inventors and human inventors under the law see Ryan Abbott, I Think, Therefore I Invent: Creative Computers and the Future of Patent Law, 57B.C.L. Rev. 1079 (2016).
Banner Credit: Zoya Retiwalla for the TRP
Effective communication is a cornerstone of numerous fields. In translational research, powerful communication is indispensable. Our outstanding faculty member – Sandy Marshall talks about her journey towards becoming a compelling speaker.
Translational research requires persuasive communication. If we want people to change their beliefs or behaviours, we need to make our new idea or intervention compelling, often through presentations to a group: conferences, patient focus groups, networking events, pitching to venture capitalists or meetings with mentors and colleagues. Is your heart racing yet? You are not alone. Presentation anxiety is a powerful barrier to progress.
My most potent stage fright was at public speaking contests when I was 10 years old. I liked writing speeches and, if I practiced 99 times, I liked delivering them, too. But as soon as a judge asked me a question, my brain would shut off. Somewhere between their mouths and my ears, their words became gibberish. It was tremendously embarrassing and frustrating.
I have a theory as to the cause of stage fright, from reading a review on social connectedness . Humans have a fundamental need to belong . For our ancestors, belonging to a group provided protection, shared resources, and reproductive opportunities . Surviving in isolation was near impossible, and rejection from a group put one’s survival at risk . Thus, genetic selection has favoured attachment and closeness, and even the possibility of rejection consumes us and influences cognitive performance [4, 5]. When I gave that speech, I became so overwhelmed by the possibility of the audience rejecting me, that my brain was unable to comprehend their questions.
Fast forward a couple of decades, and I am now a course instructor. I stand in front of over 30 accomplished students whom I admire to lead workshops and address questions for hours at a time. And I love it. This term I have been wondering, when and how did my anxiety wane? The answer, I believe, relates to connection.
Connect with myself
The fight or flight responses are not conscious and are difficult to control, but not impossible. I learned and practiced breathing in high school for athletics, singing, and pain management. I found that breathing is just as critical for public speaking as it is for muscle strength, full notes, and pain relief. “Your diaphragm is the key to regulating this system,” explains voice coach Caroline Goyder . Our brains need reassurance, ‘Everything is okay, I will not starve to death if this audience does not love my speech.’ Slow, deep breaths deliver that message; my knees steady and my stomach settles. Breathing connects me to my subconscious.
Connect with the audience
During my undergrad, I took a class in a different department from mine. I did not know anyone in the class, and I was certain they were all smarter than I was, and I did not belong. Near the end of the term, we had to give a presentation to the class and exchange peer feedback. I did a terrible job. I had not practiced enough, I read from notes, and then my clammy, shaky hands actually dropped my pages of notes all over the floor. Total bust: imposter exposed. I went home and trepidatiously read the peer feedback, “You really know your stuff, don’t be nervous!” “Great project!” “What does carcinoma mean?” “No need to be nervous, you are great!”
I was stunned. I did not think I had made a single friend in that class, but all of the feedback sounded like friends–encouraging and supportive. Nothing like the terrifying ghouls I had assumed they were.
With this new insight, I became more comfortable speaking to a group of my peers, but committee meetings during graduate school still horrified me: speaking to experts in my field who were all there to evaluate the extent of my inadequacies and determine whether or not I was worthy enough to continue the program.
Minutes before my second committee meeting, Michael Ward, an MD/Ph.D. candidate at the time, found me quietly imploding in the student room. Concerned perhaps by my green face or canine-like panting, he asked what was wrong. I sputtered, “Committee meeting.” Then Michael sat down and put it quite simply,
“Your committee members want to support your learning. Bring a pen and paper and write down everything they say and ask. Soak up all the knowledge you can from them.”
The dinosaur that had been sitting on my chest evaporated. What a fantastic vantage point. Experts, committee members, and professors are not monsters looking for opportunities to crush me. They want to support my learning; they are potential mentors.
Let the audience connect with me
In high school, we had an opportunity to read our work aloud to the entire grade plus Len Blum, a Canadian screenwriter. I read a piece about my mom’s illness and lost my voice in the middle. I could not create a sound for a long moment. I took a few deep breaths, trying to convince my tears to stay in my eyes. Afterward, Len pointed out that what I considered a mistake was the most powerful moment of the story. He said, “We all needed a minute. If you’re overwhelmed with emotion and feel like you need a break, your audience probably does, too. Use silence as part of the story.” Being vulnerable let my audience connect with me.
Since then, I have noticed that even foolish mistakes have a positive effect. In the middle of class last week, I glanced up at the screen, saw that my slides had vanished, and squealed. Yes, a startled, squeaky, ridiculous over-reaction to an easily solvable tech issue. After clumsy mistakes such as this, the audience’s reaction has been consistent: warm chuckles, then their posture and facial expressions soften, their eye contact and engagement increase. Perhaps when I squeal, sneeze, or stumble, I become more relatable and trustworthy–qualities essential to persuasion.
I still get nervous. I still need to breathe. But my perspective has changed. By connecting with my audience and letting them connect with me, I fulfill that fundamental need to belong, and the anxiety is not nearly so potent. More than that, these people, articles, and experiences have reframed my stage fright: to look at the world with a growth mindset, and not shrink from the spotlight.
1.McNamara, L., P. Colley, and N. Franklin, School recess, social connectedness and health: a Canadian perspective. Health Promot Int, 2017. 32(2): p. 392-402.
2.Adler, A., The Education of Children. 1930, London: Allen and Unwin.
3.N., D.C. and B.B. J., Social acceptance and rejection: the sweet and the bitter. Current Directions in Psychological Sciences, 2011. 20: p. 256-260.
4.N., E., et al., When we need a human: motivational determinants of anthropomorphism. Social Cognition, 2008. 26: p. 143-155.
5.Knowles, G. and G.W. L., Benefits of membership: the activation and amplification of group identities in response to social rejection. Personality and Social Psychology Bulletin, 2008. 34: p. 1200-1213.
6.Goyder, C., The surprising secret to speaking with confidence., in TEDxBrixton. 2014, TEDx Talks.