Data blocking impairing path to interoperability

Holding patient data “hostage” and requiring physicians to pay a hefty sum to get it when they switch electronic medical record vendors is one example of how data blocking is hampering the path to interoperability in Canada.

This example was recently raised by Dr. Ed Brown who noted one physician was asked to pay $6000 to obtain their patients’ records when they made such a switch.  Dr. Brown, founder and head of the former Ontario Telemedicine Network and now an advisor to Canada Health Infoway was speaking as a panelist at the last of a decade-long series of webinars on digital health hosted recently by the Sandra Rotman Centre for Health Sector strategy.

While billed as a discussion of the role of government in digital health, the virtual seminar saw a lengthy back and forth among panelists on the issue of data blocking after it was raised in the online chat.

With a person’s health data in Canada usually stored in a variety of individual physician, hospital, and laboratory electronic medical record systems (EMRs) – if it exists in an electronic format at all – few have any hope of being able to access their complete medical record in one place. Any reluctance of these various players to share the data they have with others makes tackling the problem even more complicated.

Not surprisingly, the blocking of or refusal to share health data or information by private vendors or organizations has been acknowledged as a significant issue in the United States for some time. However, attempts to address the issue have been made through federal legislation.

As the Public Policy Forum noted in its report released earlier this year on freeing the flow of health data in Canada, “we can learn from the U.S. 21st Century Cures Act, which knocked down the walls health-care operators erected between proprietary systems and set standards that enable the sharing of data across different systems.” 

“The Cures Act took on the challenge of interoperability … by prohibiting information-blocking and setting financial disincentives for noncompliance,” the Forum report continues. “As part of any credible reform, data blocking — whether by vendors, institutions or jurisdictions — must be outlawed and data portability guaranteed.”

In Canada, the issue of data blocking has not been given a high-profile in discussions around the need for interoperability of health data. But the challenge is well-recognized by community-based physicians who must often switch EMR vendors. In response to Dr. Brown’s example, one prominent Ontario physician noted on social media that this is a “huge” issue for community-based physicians as often their patient’s data is held ‘hostage’.

Asked by moderator Will Falk to provide a definition of anti-blocking, Dr. Brown said it means someone is prohibited from not providing data in an appropriate format when properly requested through a secure channel.

“We’ve got a mismatch between what we want and what exists out there,” Dr. Brown added because there are no universal standards or legislation to ban blocking. As a result, he said, there are some companies in Canada who have created “walled gardens” and will only release patient data if paid to do so.

“We need to legislate something that says, ‘you have the data, you have got to share the data.’ But it’s going to be tough. And the hardest part is going to be health providers because they’re going to have to standardize their own data on their desktops,” said Dr. Brown.

“No-one wants to share their data, lets be honest about that,” said Joyce Drohan, Chief Information Officer for the Ontario government and another panelist.

She suggested the use of a federated data sharing model where companies provide access to the data they hold to, for example, help train Artificial Intelligence (AI) algorithms without giving up control of the data itself. Drohan said this type of model is already gaining traction in the field of drug development and clinical trials.

AI and the primary care crisis: Not THE solution but part of the solution

Artificial intelligence (AI) will play some role in helping deal with the primary care crisis in Canada and could even make it “the hottest” of specialties, according to a recent panel discussion held at Queen’s University.

The need for a regulatory environment specifically to monitor AI-based tools and protect patient privacy was also raised at the discussion as was the core issue of who would pay for using these tools in primary care.

Hosted by the law school at Queen’s University in advance of a one-day workshop on the topic, the one-hour panel discussion discussed whether AI could be the “cure” to the primary care crisis. While none of the speakers said use of AI tools alone would solve the current crisis with millions without family physicians, all said they felt AI could play some role.

The panel discussion started with Dr. Michael Green, a family physician on the faculty at Queen’s and current president of the College of Family Physicians of Canada.

He said recent government initiatives to increase enrolment in family medicine are welcomed but are not sufficient to address the current crisis and that “AI has the potential to make a difference.”

He talked about how the administrative burden on family physicians is a significant factor in causing burnout and seeing many family doctors either retire or cease to practice comprehensive care. The 2021 National Physician Health Survey prepared for the Canadian Medical Association (CMA) showed administrative burden as measured by managing electronic medical records at home was significantly higher for general practitioners than for other doctors.

Scribes who document and summarize patient visits can help relieve this burden but add more expense many practices cannot afford, Dr. Green said. However, he said ambient scribes using AI are seen as a definite option and are currently being evaluated in a pilot project involving 150 physicians in the Kingston area.

“AI doesn’t have to solve all our problems,” said Dr. Green, but he added a 10% increase in productivity that might result from using such tools could help relieve the burden on family doctors and allow them to regain the work/life balance they seek. In addition to ambient scribes, Dr. Green also referenced other AI-tools that provide clinical support.

“AI has some potential solutions that we could and should and must explore,” said Dr. Colleen Flood (SJD), dean of Queen’s Law, who spoke after Dr. Green adding later that she felt AI-based tools could be especially useful in helping primary care physicians working in rural and remote areas.

Dr. Flood discussed the challenges of using generative AI and the bias associated with using algorithms based on data from the Internet. Another panel speaker, law professor Samuel Dahan talked about the high incidence of “hallucinations” or errors associated with using generative AI to deal with complex issues in law and medicine.

Because family doctors don’t have the capacity or time to rigorously assess the work of generative AI tools “appropriate regulation is needed to make sure the tools that are there are reliable,” Dr. Flood said, specifically referencing the important role of Health Canada.

Dr. Devin Singh, an emergency physician and AI innovator at the Hospital for Sick Children in Toronto, talked about the potential for making family medicine “the hottest (most attractive)” of medical specialties by integrating AI into a number of the roles family doctors have in dealing with a broad spectrum of patients.

He raised the issue of cost and whether family doctors would be expected to pay for AI tools that might improve the quality of care and patient outcomes rather than improving their own workloads. As one audience member commented “If the economics don’t make sense adoption is not going to happen.”

Dr. Singh also said guidelines were needed to help family physicians use AI appropriately.

Based on his experience with legal applications of AI, Dahan said that medical associations need to put together consortiums to design their own domain specific tools to make sure those tools are appropriate for the profession.

The Queen’s discussion was just one of many recent fora in which the potential role for AI in Canadian medical practice has been discussed. Just days earlier, a conference at the University of Toronto held by the Institute of Health Policy, Management and Evaluation heard many speakers reference digital health technologies including AI has potential solutions for the primary care crisis.

The topic is also being explored currently on LinkedIn by Dr. Darren Larsen, a family physician and a former chief medical officer at OntarioMD, in a well-received series on the potential use of AI in medical practice. In his most recent post Dr. Larsen noted “as AI technology continues to mature and demonstrate its value in improving healthcare outcomes, its integration into primary and specialist care in the community will be more evident.” 

Health misinformation here to stay: CMA poll

Canadians are seeing an increasing growth in misinformation about health and healthcare online and on social media at exactly the same time as many are losing access to their most trusted source of information on these topics – family physicians.

Attitudes towards misinformation about health was the focus of newly initiated annual survey commissioned the Canadian Medical Association (CMA) on the Health and Media, results of which were just released. These results and virtual webinar discussing the results came just days after the World Medical Association held a virtual panel on the topic of disinformation in health care.

The CMA survey of 2500 adult Canadians conducted by Abacus Data in September, 2023 found that the majority of English respondents (57%) reported having often come across health and health system information that they later found to be false or misleading.

The CMA survey found generational differences in responses, with younger respondents being more likely to use social media platforms to access health news and information. However, only about 20% of those polled said they trust these social media sources to provide accurate information.

In addition, the survey also found that 72% of Canadians believe health-related misinformation is here to stay and is in fact getting worse. And 40% of those polled said such misinformation has led to anxiety or mental distress.

At a time when millions of Canadians no longer have access to a family physician it is concerning that the CMA survey confirmed that physicians are their most trusted source of health information – followed closely by nurses and pharmacists.

Misinformation and social media have been a focus of the CMA since the presidency of Dr. Katharine Smart in 2021-2022. She made the explicit link between the current shortage in family physicians and the impact this had on Canadians being able to access to a trusted source of medical information.

In a podcast in 2021 she stated: “We have assumed that Canadians have access to a trusted source of medical information to make their health decisions. But more and more, that’s not the case. Over 5 million Canadians don’t have access to a family care physician, which has always been that foundational relationship that people have had and that source of trusted health information.” She went on to say this declining access to experts had been coupled with an increasing access to information which, on social media, is often poor.

In this and other presentations, Dr. Smart talked about the need to reimagine the role of physicians and “stepping up” to share accurate health information online and counterbalance misinformation.

At a virtual session to discuss the current CMA poll, current CMA President Dr. Kathleen Ross reiterated the need for physicians to take a more prominent role in promoting accurate health information in online discussions and on social media. She and journalist Wency Leung, who was also part of the session, also said those promoting accurate health information online or on social media should have their voices amplified by the media and other sources.

Misinformation was also the focus of a session held at the CMA Summit last year and featuring Tim Caulfield, Canada Research Chair in Health Law and Policy and arguably one of the country’s most pro-science advocates. Caulfield talked about the politicization of health misinformation, the fact this false information was resulting in people dying, and the need for physicians to take a prominent role in promoting accurate information.

The CMA is taking an explicit role in promoting accurate health information with the launch of CMA Media in 2022. In addition to funding health reporting positions at Canadian Press to promote more accurate health reporting, CMA Media also plans to develop new and innovative ways to connect online with the younger audience singled out in the recent polling results.

Messaging from the CMA and WMA was mirrored in an opinion piece published by a pair of physicians from the Netherlands in the BMJ last August. Drs. Leonard Hofstra and Diederik Gommers argued that “orchestrated social media action organised by doctors, in collaboration with media specialists, can be highly effective at countering misinformation” – a point also made by Dr. Ross.

Despite the growing toxic nature of some social media platforms such as X, Drs. Hofstra and Gommers noted “staying focused on medical aspects, instead of commenting on political issues, increased our impact and helped keep us out of trouble (such as direct threats) while using social media.” 

The CMA survey findings are in keeping with a more general survey done by Statistics Canada and reported at the end of last year which showed that 59% of Canadians said they were very or extremely concerned about any type of misinformation online, and 43% felt it was getting harder to determine what was true online compared with three years earlier.

An earlier Statistics Canada survey conducted during the early phase of the COVID-19 pandemic in July 2020, found that 90% of Canadians used online sources for information about COVID-19 and 96% of these saw information online that they thought was misleading, false or inaccurate. Just over half (53%) said they shared this online COVID-19 information without knowing whether it was accurate or not.

The global battle against health misinformation

Misinformation and disinformation about health and healthcare is never “old news” and must be challenged repeatedly using a variety of strategies and tools.

That was one of the key messages to emerge from a World Medical Association virtual panel discussion featuring a panel of international experts who made it very clear that the spread of false information about health and healthcare whether done maliciously or not is a major global threat.

Speakers at the virtual session were:

• Dr. Natalia Solenkova, a critical care physician and moderator of the panel. Dr. Solenkova is a prominent advocate for vaccination with a strong social media presence.
• Katie Owens, an information and communications officer for the European Commission.
• Siddhartha Shankar Datta, a regional adviser on vaccine-preventable diseases to the World Health Organization regional office in Europe.
• Dr. Natalia Pasternak (PhD), a Brazilian microbiologist and prominent pro-science advocate in Brazil. She currently teaches science for policy-making at the School of International Relations and Public Affairs at Columbia University.
• Dr. Osahon Enabubele, a family physician and past president of the World Medical Association and the Nigerian Medical Association

While panelists focused on the spread of mis- and disinformation during the COVID-19 pandemic they stressed how the phenomenon has existed long before COVID-19 and has infiltrated all areas of healthcare from cancer to mental health. Each speaker was careful to differentiate between misinformation intended to deliberately spread false information and disinformation in which relaying incorrect information is not intentional.

In her introductory remarks, Dr. Solenkova noted the global spread of misinformation and how some physicians and other health care provides have contributed significantly to this spread. She also noted how the growth in the number of published research articles contributing to misinformation has documented by the growing number of retractions of articles.

In her presentation, Owen noted how a small, but vocal and coordinated group of individuals spread misinformation and sow “fear and uncertainty” across a variety of topics from vaccines to climate change, migration and health and the Russian invasion of Ukraine.

Owens documented the impressive number of steps the European Union has taken against mis- and disinformation in healthcare noting the need to find a balance between countering incorrect information and allowing free speech.

She noted that when challenging misinformation “prebunking” through education and information is often more effective than “debunking” false information that is already circulating. She talked about the importance of communicating at the right time, using appropriate language, on the most used channels, using trusted messengers. Owens and other panelists also talked about the value of networks and collaborative approaches.

Datta discussed the complexity of the journey to vaccination and how dealing with the issues involved is not linear. He said the demand for vaccines and acceptance of vaccination is multifactorial and context specific – depending on time, location, and the vaccine involved.

In common with other speakers, he stressed the importance of physicians and other healthcare providers as being trusted sources for information on health issues and how their interaction with patients or caregivers is critical in getting vaccines accepted.

“Parents desire consistent and accurate information about vaccination benefits and safety presented clearly and in simple language, conveyed in a respectful and positive manner,” Datta said.

Marginalized and underserved communities are often reached last when it comes to providing official information on vaccines and other health interventions and this means those promoting misinformation will often reach them first. Complex and locally designed interventions and community leaders and micro-influencers are effective, he said.

Dr. Natalia Pasternak discussed her work with the Instituto Questão de Ciência, a non-profit organization in Brazil dedicated to the promotion of scientific and critical thinking and the use of scientific evidence in public policies.

“We are trying to bring science into policymaking by engaging by government members and medical associations,” she said, in addition to providing courses for physicians and healthcare workers and journalists.

She discussed her 9-hour deposition against then Brazilian president Jair Bolsonaro (who warned the COVID vaccine can turn people into crocodiles) and learning how difficult it is to speak to different publics in a polarized, political environment.

“Scientists need to be more capable of speaking to politicians. We have to be there. We have to provide them (politicians) with tools to make better decisions,” Dr. Pasternak said.

She also talked about working with the Brazilian Society of Pediatricians and how many pediatricians were concerned they did not have the proper information or training to communicate about vaccine safety. “Physicians want this training and someone should be providing this training,” she said. During pandemic people started questioning all vaccinations – got pediatricians “really, really worried” that they don’t know what to say to these parents and that they required training

When virtual care kills (rarely)

A UK evaluation of rare incidents in which primary care provided by telephone or video has ended with the death or serious harm to a patient provides insights into what can be done to make sure use of virtual care remains safe.

The study published in BMJ Quality and Safety evaluated 95 serious safety incidents involving what the researchers call remote interactions between 2015 and 2023. The study also evaluated the use of virtual care in a diverse range of 12 general practices throughout the United Kingdom from mid-2021 to the end of 2023.

Many reports of the study published in general UK media have focused on the downside of virtual care. For example, the Daily Mail had a headline saying, “Patients are ‘dying from remote GP consultations as major study warns virtual and phone appointments can miss serious illnesses.” However, the study authors repeatedly note throughout the article the rarity of serious adverse events associated with virtual care.

Writing on the social media platform Bluesky, Dr. Trish Greenhalgh, one of the study authors and professor of  primary care sciences at Oxford University states: “this paper is MAINLY (emphasis hers) about how remote care in GP land is remarkably SAFE. We followed 12 GP practices for 2y, looking for (among other things) evidence of patient harm from remote consultations. We found NONE.”

In an associated post, she added: “a BIG finding from this study was how safety incidents are almost always AVOIDED through the conscientious actions of front-line staff (from receptionists to senior docs).”

In their analysis of the series of safety issues associated with remote care, authors of the study identify a wide range of contributing factors especially at the system level.

“Introduction of remote triage and expansion of remote consultations in UK primary care occurred at a time of unprecedented system stress (an understaffed and chronically under-resourced primary care sector, attempting to cope with a pandemic),” the study notes.

System issues associated with adverse events and identified in the analysis include:

• Technically complex access routes which patients found difficult or impossible to navigate requiring non-clinical staff to make clinical or clinically related judgements.
• High demand, staff shortages and high turnover of clinical and support staff making remote encounters inherently risky.
• Single episodes of care for one problem often involving multiple encounters or tasks distributed among clinical and non-clinical staff 
• Not sufficiently adapting organizational routines to virtual care
• Training, supervising, and inducting staff being made more difficult when many were working remotely. 
   
• Communication is singled out as an important factor associated with adverse events and virtual care.

“Many safety incidents were characterised by insufficient or inaccurate information for various reasons. Sometimes, the telephone consultation was too short to do justice to the problem; the clinician asked few or no questions to build rapport, obtain a full history, probe the patient’s answers for additional detail, confirm or exclude associated symptoms and inquire about comorbidities and medication. Video provided some visual cues but these were often limited to head and shoulders, and photographs were sometimes of poor quality.”

The additional burdens faced by patients and caregivers through use of virtual care was also identified. “Given the greater importance of the history in remote consultations, patients who lacked the ability to communicate and respond in line with clinicians’ expectations were at a significant disadvantage” the study states. “Several safety incidents were linked to patients’ limited fluency in the language and culture of the clinician or to specific vulnerabilities such as learning disability, cognitive impairment, hearing impairment or neurodiversity.

In a section on lessons to be learned from the study, the authors note that with virtual care relying more on history taking and dialogue, “verbal communication is even more mission critical.” They add that a final message from the analysis is that “clinical assessment provides less information when a physical examination (and even a basic visual overview) is not possible. Hence, the remote consultation has a higher degree of inherent uncertainty.”

In their summary of the article the authors give a shout out to front-line staff: “Rare safety incidents (involving death or serious harm) in remote encounters can be traced back to various clinical, communicative, technical and logistical causes. Telephone and video encounters in general practice are occurring in a high-risk (extremely busy and sometimes understaffed) context in which remote workflows may not be optimised. Front-line staff use creativity and judgement to help make care safer.”

(Graphic credit: HA.com)

#Rainbowbridge: A sad metaphor

A car hurtling towards a barrier at high speed and then exploding and killing the occupants is a sad but perfect metaphor for the state of news today.

The recent incident at the Rainbow bridge on the Canada/US border in Niagara Falls demonstrates just what goes wrong when too many people – including prominent politicians – rely on hasty and poor reporting and social media posts to support preconceived perceptions.

When the car exploded at the border on Nov. 22 the social media platform ‘X’ was immediately populated with posts about a possible terrorist attack, all nicely packaged under the hashtag #Rainbow bridge or #Explosion). Fox News then greatly amplified these by almost immediately quoting unidentified sources stating this was indeed a terrorist incident.

Post after post quickly piled on with reports of how the incident was the result of terrorists attempting to ram their way into the US with a carload of explosives to wreak havoc on Thanksgiving festivities in New York.  The rare posts recommending a wait-and-see attitude until more facts were in were swamped in the deluge.

Several hours after the incident, the New York governor and FBI stated there was no evidence of a terrorist attack and no explosive were found. As a CBC analyst wrote that evening “There was no attack from Canada; the incident occurred entirely on U.S. soil; in fact, authorities don’t believe it was a terrorist attack at all.” (In fact, posts almost 24 hours later indicate the incident seems to involve a high-priced Bentley and a Kiss concert)

For a decade now ‘X’ and other social media platforms have provided almost instantaneous reporting on news events around the world. With more people relying on social media for their news the problem is the information these days is more likely to be wrong when first reported. More worryingly, more people are weaponizing this information for their own ends and/or deliberately posting false information. The innate desire for sensationalism further fuels the tendency to exaggerate or even fabricate news.

The #Rainbowbridge incident comes as the Middle East conflict continues and where all of the shortfalls of news reported on social media are writ large. That war is the enemy of truth cannot be denied nor can the need or desire to be informed about what is going on around us.

Journalists have always tried to scoop each other and provide the news more quickly – however there used to be less of a reliance on unnamed sources and slightly more attempt to confirm the information before going live. While Fox News retracted its original statements about the terrorist attack and said it was mislead by its sources, the original perspective remained up for many hours.

There is now also more of a tendency to believe news on social media that comes from less credible media outlets or even just friends, family and people you would like to believe. The gutting of traditional newspapers and reduction in the number of professional working journalists has just exacerbated these problems.

Trust in traditional media is low and many do not have the skills or knowledge to objectively assess the news that they see on social media. Bots spreading false information, whether AI assisted or not, are not helping matters.

The last half-century may have proven to be the high point for journalism with relatively well-financed media outlets trying to provide objective information in a truly balanced fashion.

Absent this, what is needed is providing far more education in our schools and to the public in general on how to assess the news and who is feeding it to you.

(Image – screen capture of Rainbow Bridge explosion sourced from X)

Physician health and well-being in the spotlight: CCPH 2023

Representatives of a battered and stressed medical profession gathered in Montreal and virtually last week for the 7^th annual Canadian Conference on Physician Health (CCPH) – the first such meeting in four years.

Acknowledging the tremendous pressures facing physicians today, the 450 delegates in attendance – the largest ever at such a meeting – heard about the wide variety of initiatives underway to address physician health and well-being both at the individual and at the system level.

“Medicine has changed. The world around us has changed but we are all here to discuss important issues,” said Dr. Jeff Blackmer, chief medical officer and executive vice president of global health for the Canadian Medical Association (CMA), which hosted the meeting. “Many of us are stretched so incredibly then (and) have been targets of harassment and bullying at work and in training programs,” CMA President Dr. Kathleen Ross added.

Later in the meeting, Dr. Ross released a statement referring specifically to the current conflict in the Middle East. “The Hamas-Israel conflict is causing significant tensions for Jewish and Palestinian physicians, with many experiencing antisemitism, racism, Islamophobia and other forms of aggression,” the statement noted.

The impact of the COVID-19 pandemic and its hugely negative impact on physicians was also referenced repeatedly. “COVID is not over it has a lingering presence. It has altered our ability to offer quality patient care … and we will never recover,” said opening keynote speaker, Dr. Jane Lemaire, co-director of WellDoc Alberta.

What emerged very clearly this year was the recognition of how interlinked the well-being of physicians is with the healthcare system as a whole and the health of the patients of which they care. “We are caught in a vicious cycle of work overload, burnout and attrition of the health workforce which has critical population health and health system impacts,” said Dr. Ivy Bourgeault, leader of the Canadian Health Workforce Network.

At one point in the meeting, an emergency physician from Montreal rose to ask why it was so hard to persuade people that good physician health translates into better patient outcomes.

Dr. Edward Spilg, an associate professor of medicine at the University of Ottawa noted that a decade ago individual resilience was identified as the way physicians could best deal with wellbeing issues. Now, he said, there is a recognition that system-level interventions are essential. Dr. Lemaire said a multi-pronged approach to culture change is required to improve physician well-being and the healthcare system must support such a change.

While much of the focus of the meeting was on these system-level approaches, some sessions also dealt with how individual doctors could deal with the stress of medical practice today. In a keynote address, Dr. Kristen Neff, a clinical psychologist at the University of Texas, Austin advocated self-compassion consisting of “kindness, mindfulness and common humanity”.  In another session, Collingwood family physician Dr. Caroline Bowman who has been diagnosed with MS discussed shame resilience as a missing component of physician wellness.

A focus on improving the well-being of medical learners and the environment of academic medicine came from two sessions discussing the Okanagan Charter, an international framework to support well-being at academic centres. Deans of all 17 Canadian medical schools have committed to following the charter, said Dr. Melanie Lewis, chief wellness officer at the University of Alberta.  But she added only 12 of the 17 schools (soon to be 13) have formally adopted the charter to date and she is the only person to currently hold the position of chief wellness officer at a medical school.

The ambivalence with which many physicians view practising medicine today was encapsulated in a plenary session at the conclusion of the conference where speakers engaged in a formal debate on whether there are still compelling reasons to practise despite the challenges involved.

Manitoba physician and best-selling author Dr. Jillian Horton who moderated the debate noted both that “we leave jobs we love because they have become undo-able,” and that “most of us are here because we are looking for reasons to continue to do what we do no matter how difficult is.”

“The healthcare system values efficiency over patient care and values data over relationships. The painful reality is very little money and very little decision-making effort goes into our well-being,” said Dr. Julie Maggi, director of faculty wellness at the Temerty School of Medicine, University of Toronto, one of the two physicians charged with arguing the futility of continuing to practise.

Tasked with arguing in favour of continuing to practise, Dr. Saleem Razeck, professor of pediatrics at the University of British Columbia talked about the satisfaction of being a physician even with “a full bladder, empty stomach and dry mouth.”

“We are at the precipice of greatness,” said his debating colleague Dr. Andrew Ajisebutu, a neurosurgery resident at the University of Manitoba, in noting all the current advances in medicine. “At times the job does suck, but the profession does not.”

(Image: Dr. Jillian Horton moderates final plenary at CCPH 2023)

Clinicians “all alone” when integrating digital health advances: Larsen

When it comes to interoperability and linking health data and the promise of digital health, we still have a long way to go despite the continual hype, and the wholesale adoption of virtual care seen during the first year of the COVID-19 pandemic. Furthermore, many innovative breakthroughs in this area are being driven by the private sector rather than coming through the publicly funded system.

These and other provocative statements marked the first of this season’s virtual series of digital health webinars hosted by the Sandra Rotman Health Centre for Health Sector Strategy.

Attended by many of Canada’s leading experts on digital health, the session marked the end of a relatively quiet period for discussions of digital and virtual health care in Canada. The high-profile OntarioMD conference will follow later in the week with the Canada Health Infoway partner conference and Digital Health Week taking place in November.

Setting the stage for the discussion was Dr. Darren Larsen, a family physician who has had many high-profile roles coordinating digital care in Ontario and recently worked for both Accenture and Telus Health.

“There is actually no ‘there’ yet when it comes to this conversation around digital health, especially as it relates to care in the community and the work we’re doing as physicians and nurses and care providers,” Dr. Larsen said.

While 90% of physicians in the community and all doctors in hospitals now use electronic medical records (EMRs), he said, community physicians are not sharing data and have no incentive to do so. However, he said  there have been many significant advances in Ontario which allow community doctors to see what is happening to their patients in hospitals.

As for virtual care, he noted while “even though 90% of family physician offices were opened during the pandemic, there was a lot of care done virtually for so many reasons that we all understand.” But he added, the predominance of virtual care “is definitely tapering off now” because of the need to still provide in-person care for many medical services.

With reduced government funding for virtual care services, he said, much of the impetus for this type of care is being driven by the private sector and this is creating discord. What is concerning, Dr. Larsen said, is that many standalone private virtual care clinics are focused on high-volume, low complexity care which is counter to the type of high-complexity, lower volume care many primary care patients now require post-pandemic.

For digital care overall at least in Ontario, Dr. Larsen said “clinicians, sadly, are on their own when it comes to integrating digital tools in their practices. We have to bear a 100% of the cost of these things, we have to figure out if they’re going to integrate with our EMR systems or not … and the EMR companies are not very interested in tagging on products that dive there way into their databases and architecture. for so many reasons.”

“There’s very little trust, sadly, between us as providers, and some of the digital companies that are out there (with) really spectacular products.”

At this event, moderator Will Falk, in addition to peppering panelists with erudite questions played the role of the frustrated, engaged patient. He noted that as a patient, he has had to coordinate the sharing of information between his physiotherapist and his family physician and he likened it to being a telephone operator connecting different phone lines.

Dr. Larsen noted that in the current health care environment “patient expectations are changing and tolerance to private pay is changing.”

A perspective from the private sector was presented by Sonya Lockyer, president and CEO of the Lifemark Health Group, now owned by Shoppers Drug Mart, which offers community rehabilitation, workplace health and wellness and medical assessment services. She talked about organizations such as Shoppers creating (with patient consent) “micro ecosystems” including 600 affiliate primary care clinics that allow patients to see their own data and create one view of their health as well as providing insights into care.

“The real opportunity, of course, is to not just create these micro ecosystems within a high performing family health team, but also to push even broader into the public system at large,” Lockyer said.

“The private sector is willing and able to share and understand, but there isn’t a warm reception on the other side,” she said, noting that to date governments are not willing to mandate that all practitioners in a region are coordinatd in delivering care whether they work in the public or private sector.

Zayna Khayat, VP of client success and growth at Teladoc Health Canada and a senior advisor with Deloitte, said that with much of the innovation in digital health occurring in the private sector there is a need for more partnerships and innovative thinking on how care is funded and delivered.

The real promise of digital health, she comes from “really new models of care, new operating models, and new business models, which allow you to pay for things differently and have different characters do different things and get paid for it.” In fact, she said, Deloitte has estimated that 85% of everything being done in healthcare today will shift to these new models.

Dov Klein, VP of value-based care at Ontario Health, and the final speaker on the panel talked of the desire in Ontario to develop a system focused more on outcomes and in preventing patients from requiring acute-care services. He also hinted as changes to come for the Ontario Health Teams providing primary care in the province.

Sept. 8, 2023: Social media and medicine update

Ottawa during the spring smoke event

Gather around and warm yourself by the glimmering sparks of evidence-based science in the ruined infrastructure of the platform previously known as Twitter as we provide the 2023 version of the professional use of social media by physicians and in medical education.

Well, things might not be quite that bad, but for the first time in 11 years of speaking to first year medical students at uOttawa I was not telling them that use of social media can definitely be of benefit to them professionally and that the platform previously known as Twitter is their best option.

To quote Mark Carrigan, a lecturer at the University of Manchester: “I believe Twitter can now be a dangerous place for many academics, particularly if they are from minoritized groups.”

While some of us have been hanging on grimly to our presence on X (the platform previously known as Twitter), hoping the situation will change for the better rather than continue to get constantly worse, many prominent physicians, patient advocates and others have fled X for other platforms such as Mastodon or threads. And things seem to be getting worse.

Earlier this week, moderators of one of the only remaining compelling and inclusive medical and healthcare tweetchats #hcldr announced that it would be winding down. Medical and health tweetchats of distinction have been discontinued but in this case the situation seemed sadder. As one of the #hcldr co-hosts Joe Babaian (along with Colin Hung) wrote in a blog announcing the move: “We all know what a hugely different place Twitter is … The vehicle is damaged.”

In my presentation to uOttawa students I discussed the many ways Twitter (now X) has declined over the last couple of years and how many alternatives have arisen in an attempt to replace it. However, as others have pointed out these alternatives have not successfully filled the void for those interested in medicine or healthcare, especially academics.

“We’re in a situation now where it’s not clear that any of the alternatives (to Twitter) will become the alternative. We’re entering a more fragmented landscape where the path to visibility and promotion is going to involve maintaining a presence across a whole range of platforms,” Carrigan wrote, adding that this will require a relatively sophisticated understanding of the platforms and a strategy for using scheduling software. “Any lingering sense of Twitter as a democratising space where academic hierarchies can be levelled, further falls apart under those conditions.”

His views were echoed more forcefully by Professor Inger Mewburn, director of researcher development at The Australian National University who wrote a blog titled: The enshittification of academic social media.

“Telling academics they can achieve career success by using today’s algorithmic-driven platforms is like telling Millennials they could afford to buy a house by eating less avocado on toast,” he wrote in the July 10 blog. “It’s a cruel lie because social media is a shit way to share your work now. Basically, it’s no longer true that you can build a substantial audience by doing Good Work and telling people about it. Today you can talk about your research on social media platforms all you want, but hardly anyone will hear you unless you pay cash money because Algorithms.

Mewburn closed his blog with tips for academics and students and some of these aren’t half bad such as noting social media can be social and a good place to have fun and chat with people and that you should always “own” your own content rather than just produce it on social media platforms. He also urged teachers not to use social media as tools in their classrooms as it may exposure students to the toxic elements that now seem to define much of the social media landscape.

In the face of all of this doom many continue to maintain that X and social media platforms are in general are vitally important places for physicians and others to maintain a presence if only to challenge the politically motivated misinformation about medical and health issues that continues to cost people lives. As Dr. Teresa Chan, the inaugural dean of the medical school at Metropolitan University in Toronto told me earlier this summer: We need to be on social media because the world is on social media. We have to learn to fight misinformation – not be part of it!”

Tim Caulfield, Canada Research Chair in Health Law and Policy and a leading debunker of health misinformation had a similar message for those attending the Canadian Medical Association Health Summit in Ottawa in August. After tracing the leading role social media has had in spreading life threatening falsehoods, he told physicians they had a critical role to play in challenging this information.

X may now be a lousy place to network with your colleagues and associates and grow academic credibility by sharing links to your studies. But if you are of an altruistic bent and believe that advocating for science-based knowledge is important it might be worth hanging in there until the entire platform shatters under mismanagement or falls off a flat earth.

Twitter and healthcare: The end is nigh … again

In this Canadian summer of choking forest fire smoke and unnaturally violent storms, it should come as no surprise that apocalyptic cries about the end of Twitter as a viable platform for discourse about healthcare and medicine should once again be heard loudly.

Since Twitter was purchased by Elon Musk last fall there have been repeated dire predictions about how the platform is no longer useful or trustworthy for physicans, patients or anyone wanting a reliable source of healthcare information and/or the learned exchange of views.

In a blog posted at the end of last year, I detailed all the turmoil being experienced by Twitter at the time and noted that “it is clear the uncertainty and confusion around Twitter will continue and probably for some time.” Such has been the case.

The past weekend saw Musk both limit the number of tweets that could be viewed by unaccredited users and an announcement that the invaluable free Twitter management tool, Tweet deck was both being reconfigured (badly in the eyes of many users) and will soon be restricted to paid subscribers only.

Over the spring, it has been clear some Canadian physicians have stopped using Twitter to keep themselves informed about healthcare news and also to inform others about medical developments or their views on healthcare issues. Live tweeting of medical conferences and events has become very much a hit and miss venture with some meetings still seeing strong participation while others are supported by just a single live Tweeter (I know as I have been that person). In addition, many report that a changed Twitter paradigm has made it harder to get one’s tweets seen or to see the tweets of those you are interested in.

The decline in the value of Twitter has been paralleled by a growing interest in other social media platforms that could take its place. Mastadon saw an explosive growth in membership in the immediate wake of the Musk purchase which appeared to taper off rapidly in the spring as users found the platform did not mimic the Twitter experience. In the wake of the rate limiting announcement by Musk, Mastadon once again seems to be coming to life. It was also announced this week that Meta will launch Threads, a “text-based conversation app” linked to Instagram to rival Twitter. This is ironic given that at the same time Meta has said it will restrict access to Canadian news sources on Facebook and Instagram to protest recent Canadian legislation.

But to many physicians it seems Twitter still matters. A study of US physician Twitter use finds that the profession continues to rely on the platform. An analysis reported by Greg Mathews, CEO of HealthQuant showed that the numbers using Twitter remained about the same between the third quarter of 2021 and the second quarter of 2023. “For now, at least, twitter continues to be THE platform where doctors are engaging,” he said.

As someone who follows what physicians are doing and saying and tries to curate information for the profession and their patients the message is clear. Until Twitter goes totally dark – in a real or a metaphorical sense – I will still be there too.