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Medical and health care writer and editor. Views are my own

#HIMSSEurope19: The B side

Bside

 “These are the days of miracles and wonders

Don’t cry baby, don’t cry”

The Boy in the Bubble: Paul Simon

After every major digital health conference I seem to come away with the sound of Paul Simon’s Boy in the Bubble from his 1986 Graceland album ringing in my ears.

The recent #HIMSSEurope19 conference in Helsinki, Finland was no exception.

As always – and seemingly with increasing rapidity and volume at these conferences  – there were demonstrations of new innovations, start ups and other impressive tools facilitating how care can be delivered more effectively and efficiently. Miracles and wonders.

But to the credit of the HIMSS organizers they also had sessions focusing on the dystopian elements of health technology – the B side of the digital revolution if you will. In fact, there was a whole stream of sessions called radical health dealing with issues such as climate change and migrant health. To quote the program: “The world is currently witnessing an unprecedented global migrant and refugee crisis that will fundamentally affect and challenge European health systems in the future. And these migration waves will only accelerate with climate change refugees. Are European health systems ready for a tsunami of migration waves? What can we do in order to prepare? Can technology help the integration of migrants and refugees?”

However, a more fundamentally troubling session was the one that featured a number of futurists and researchers discussing the potential downsides of technologies which are fueling our advances in digital health

To quote @Artu Olesch, a freelance journalist who attended the session: “As human species, we develop slower than the technology. On the other hand, we have to keep experimenting in search of innovations that can potentially improve our world. Unfortunately, there is always the danger that radical technologies created for a good purpose will influence our lives negatively.”

This negative side was expounded with great eloquence by the speakers who referenced the social-control aspects of technology as being seen in China now, the impossibility of maintaining anonymity of health data (“two data points and we have you”), the potential consequences of Big Data and the use of AI in health care (especially if the algorithms used fail to reflect women and those who are not white) and gene editing (which, to quote one speaker, “is liking having nuclear weapons in the hands of apes”).

When you hear speakers such as biohacker Teemu Arina (@tar1na) talking about the need to modify our genetic code to adapt to today’s fast-changing society you realize the magnitude of the changes we are currently facing and how unprepared we are for them.

The session made it clear that a future in which people will trade their personal health information and approve real-life constant monitoring of their health in exchange for lower health insurance rates is very, very close indeed.

(Image courtesy of Go Clipless)

 

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Morphing with Moomins: #HIMSSEurope19

Moomin

To be honest, one of the main reasons to write this blog was the chance to use the headline – which probably needs some explanation. And if the explanation doesn’t make too much sense then I can only blame jet-lag and a degree of digital health overload from attending the first day of the HIMSS Europe 2019 digital health conference in Helsinki, Finland.

And just to be even more inexplicable, the main theme of this blog is – as it has been a few times this year – AI and its applications in health care.

It is currently impossible to avoid AI as a conference theme/main topic of conversation at health technology or digital health conferences. In fact, as this conference goes on in Helsinki another conference in Boston dedicated specifically to AI and machine learning is just about to begin. To quote from an AI session description here at HIMSS: “Personalized medicine, predictive analytics, augmented diagnostics, real-time processing of wearable data… AI is buzzing and feeding our imaginations with hopes and dreams of a truly data-driven healthcare with optimal clinical and financial outcomes.”

But what struck me while listening to that well-attended sessions is that AI has morphed from Big Data as a major theme in digital health care.

Remember how just a few years ago everybody was talking about Big Data (with the capitals) and the potential benefits for care delivery from the incredible amount of data being accumulated on all aspects of people’s health? Well, it is clear that this theme has been coupled with machine learning and artificial intelligence to take the potentiality to another level. Now when speakers – such as those from the Helsinki University Hospital (HUS) talk about the “data lake” they are filling with a wide range of genetic, demographic and health data from their patients, they are doing it in the context of taking all of this information to create algorithms to enable AI use.

In fact, according to session moderator Dr. Mikka Korja, a neurosurgeon at HUS, Helsinki is one of the world leaders in exploring the use of AI in health care with 100 projects underway here.

That data are critical to effectively utilizing AI in health care is without question. But, as speakers repeatedly noted, it is not just the quantity of data points needed to create effective algorithms but also the quality of data required. It is clear that effective use of AI is impossible without standardized digitized data collected in an electronic format. The point was also made that most health care organizations are currently not configured to continually gather data and feed it back into the system in a manner that is required to develop AI functionality.

Most of the speakers at the HIMSS session discussed the potential applications for AI to improve clinical diagnosis and this remains the most sexy aspect of AI. Yet, I thought it was actually Dr. Kaveh Safavi, senior managing director at Accenture Health, who gave the most compelling presentation when he noted that enhanced diagnosis is actually one of the more challenging roles for AI to play in health care. During question period he noted that that for AI to augment diagnosis requires a high level of machine learning with masses of data which might require years of work and with all of this compounded by dealing with privacy and security concerns.

Where AI can and will have a huge impact, Dr. Safavi said, is in cost reduction and improving the consumer experience, in addition to outcome improvement. He argued that effective use of AI will help reduce staffing requirements and increase capacity at a time when “we’re running out of people to provide health care.”

Dr. Safavi also quoted an Accenture study showing the main benefits from AI in health care will come in areas unrelated to diagnosis with the biggest estimated potential benefits being in the areas of; robot-assisted surgery, virtual nursing assistants, administrative workflow assistance, and fraud detection.

For all the hype you hear about using AI to better detect melanoma or leprosy, Dr. Safavi’s comments are worth serious consideration.

Oh and about that headline. For those unfamiliar with Finnish culture, Moomins are an incredibly popular family of fictional creatures created by Tove Jansson in the 1940s and featured in books, comic books, TV, plush toys etc. And at a conference in Finland who could resist working them into a headline.

 

 

Two-tiered texting: Do virtual visits spell an end to medicare

ehealthpic2

Arguably the most significant plenary session at this year’s recently concluded #ehealth2019 conference in Toronto was a panel discussion on the impact of virtual primary care visits on continuity of care.

The panel featured Dr. Ed Brown (@DrEdMBrown), the CEO of the Ontario Telemedicine Network (OTN), Dr. Brett Belchetz (@Brettbel), founder and CEO of Maple, the country’s largest private provider of virtual care, and Dr. Monika Dutt (@Monika_Dutt), a family and public health physician and an outspoken advocate for social justice.

Among the dozens of presentations at the conference co-sponsored by Digital Health Canada, Canada Health Infoway and the Canadian Institute for Health Information this presentation shone the brightest  light on the core issue facing the growth of digital care in Canada – how can the demand and interest in such an approach be accommodated within a publicly funded health care system already overwhelmed by financial demands?

One answer that seems clear is that the demand to be able to text a family physician at any time and receive an answer within minutes is so attractive that those with money or 3rd party insurance can and will pay to do so – thereby creating the two-tiered system, based on ability to pay, which has always been so adamantly avoided by the Canadian psyche.

The growth of Maple shows just how this demand is big and is growing. Dr. Belchetz noted that when Maple started in 2014 only one quarter of one percent of physician visits in Canada were done virtually. Now, he says, Maple has a network of 400 family physicians across the country with 350,000 patients paying for “almost instantaneous” access to care.

Dr. Brown noted the interest in this approach was confirmed by both patients and providers in a pilot conducted by OTN in five regions of Ontario  involving 277 providers and 33,000 patients. That pilot showed overwhelming support for the approach and he noted 90% of the interactions were resolved through secure messaging and did not require in-person follow-up.

“Basically, people just want to be able to text their doctor,” Dr. Brown said adding that the pilot documented very little overuse or abuse of the approach by patients.

While acknowledging the benefits of virtual care especially in rural and remote areas, Dr. Dutt noted virtual primary care must be integrated into the comprehensive, integrated and publicly funded primary care system or else it risks creating inequities between those who can and cannot pay privately for the service.

British Columbia is currently the only jurisdiction in Canada that provides funding for family physicians to interact virtually with patients. And, as Dr. Belchetz noted, this is confined to video visits while he said what patients really want is the ability to text with their physician.

The interest and demand for virtual primary care is so great, Dr. Belchetz said that other provinces are “terrified” to fund it because of the financial demands it will place on already overburdened systems.

Drs. Belchetz and Brown said it will be important to be able to demonstrate that virtual primary care provides value for money and can be delivered in a cost-effective manner in order for provincial governments to agree to put it into the fee schedule for physicians.

Dr. Belchetz also made the point that instantaneous virtual access to a family physician means a person with a non-urgent or self-limiting condition – he used the example of an itchy toe – might be inclined to contact a physician about it whereas if an in-person visit was required then they probably wouldn’t bother. He said there needs to be a way of triaging or gating access, so such frivolous demands do not overwhelm the system.

Today that is done in Canada by requiring payment to access systems such as Maple – a two-tier system based on ability to pay if you will.

Should virtual access to a family physician become an essential requirement for health care in the 21st century – as many think it is fast becoming  – absent any effective method of making this affordable it arguably spells the end to equitable access to care as we know it.

One EMR to rule them all: The @HQOntario #HQOchat

Onering

Recently, Health Quality Ontario hosted a lively and informative tweet chat (#HQOchat) on integrated care – and again and again the need for a shareable electronic source of patient information was mentioned as key enabler.

The chat featured a distinguished panel of moderators: Health Quality Ontario VP of Quality Improvement Lee Fairclough (@lfairclo), patient advocate Annette McKinnon (@anetto), University Health Network President and CEO Dr. Kevin Smith (@KevinSmithUHN) and Marathon, ON family physician Dr. Sarah Newbery (@snewbery1). With more than 100 participants, the discussion was wide-ranging and focused on what is already being done and what could be done better to integrate the care patients receive in Ontario.

The importance of a unifying electronic medical record (EMR) or source of patient information to allow patients and providers to better manage care and help ensure the seamless transition in care across different environments was raised repeatedly.

Those who have been following discussions about EMR and health technology over the last couple of decades will recognize this as a riff on the old theme of interoperability and the need for EMRs and other systems housing patient data to be able to communicate better with each other.

“Today it seems so possible, and (it’s) time to put focus on digital solutions to support integration,” was how one participant put it. Asked what integrated care meant to them, another responded “from a patient’s perspective, the whole team knows what it’s going on – there’s no need to repeat that story / circumstance over and over again,” to which a physician responded: “(we) need a way to have easy digital transitions of this info.”

In response to a question about what was needed to build a fully integrated health care system, Health Quality Ontario Interim President and CEO @annagreenbergON answered in part “patient and caregiver access to their own records. EHR. Virtual care.” Another participant answered: “A fully integrated system is 1 inspired by patients & caregiver needs, as articulated by them. Patients & caregivers are fully involved co-designers of that system. There is single portal where all medical data are held, synchronously accessible by patient & doctor.”

On the flipside, the lack of accessible electronic patient information was identified as a barrier to integrated care.

“ …. who can take lead in shepherding all providers into using common EHR (electronic health record) framework? It’s tragic that even hospitals across from each other can’t share easily. We also block innovative private partners who are lost/blocked from plugging into a standardized network,” one physician wrote in a post.

“…we don’t have access to our primary care records and even access to hospital records and lab results is uncommon. So, we need access to more info,” @anetto posted.

Another doctor tweeted: “I think the genie has already left the bottle to consider a single EMR – need instead to focus on joining up the info out there – Connecting Ontario is probably the best option to build on!”

“We need multiple options to access and share information,” stated one post.

And this post put some context to the discussion: “A province wide record would definitely be helpful, but I think it’s more than that. The technical solutions are important, but we also need to be mindful of things like relationships, good communication, & having time/skills to collaborate.”

 

 

How do you license a black box?

 

Blackbox

Amidst all the recent hype and hope surrounding the use of machine learning and AI in medicine it is good to know someone is also asking how the heck we going to figure out whether the proposed algorithm or application is doing what it is supposed to be doing.

Enter Health Canada’s Digital Health Division (you will be pleased to know we have one), created a year ago to do just that (among other things).

At the recent CADTH symposium in Edmonton, Dr. Tyler Dumouchel (PhD), a senior scientific evaluator in that division gave a fascinating overview of regulatory challenges currently facing Health Canada as applications utilizing machine learning and AI are already being submitted (and receiving approval).

While noting that AI has the potential to revolutionize health care, Dumouchel said there is currently no established regulatory framework for assessing AI in medical devices. Hence the challenges, he enumerated which include:

  • How to balance encouraging innovation and facilitating market access with safety and effectiveness.
  • What pre-market authorization should be required from the manufacturer and should we be regulating manufacturing processes rather than the finished product?
  • How reliable and representative are the training data used to develop the particular application (a biggie)? Dumouchel noted such data need to reflect the Canadian patient population, be accurate, done on multi-centre basis, and include accurate disease prevalence data.
  • How do we know the algorithm used is generalizable and transferable and what is the best approach to use to ensure the algorithms used generate correct and predictable results?
  • What are the best metrics to use to assess the performance of an AI algorithm?
  • How can we ensure that AI is integrated appropriately into its intended environment without unintended consequences?
  • When and how do you assess to continuous learning algorithms where results can vary in time?
  • What sort of post-market regulation framework is appropriate for AI applications?
  • Who is accountable if the application makes a mistake?

These are all obviously important issues and it is gratifying that the federal government has acknowledged them and is taking them into consideration.

But there is some sense of urgency here. As Dumouchel points out, Health Canada doesn’t want to be left behind internationally when setting standards for medical devices that use AI algorithms.

Disrupting a futuristic health care system near you – patients #CADTHsymp

CADTH

Artificial intelligence, genetic engineering, targeted wonder drugs? The opening plenary on the topic of disruptive technologies in healthcare transformation at arguably Canada’s top health technology policy conference held the promise of all of these.

But patient partnering and involving patients?

Indeed.

Perhaps it should be no surprise that discussion at one of the first Canadian healthcare organizations to wholeheartedly embrace patient involvement, the Canadian Agency for Drugs and Technologies in Health (CADTH), should settle on patient participation as the biggest potential disrupters in health care in the years to come.

Opening presenter at the CADTH symposium in Edmonton, Dr. Irfan Dhalla, VP of Evidence Development and Standards at Health Quality Ontario, set the stage by stating that biggest change to health care in next few decades may be partnering with patients for not just their own care but in how we organize health care and run health care organizations.

Dr. Dhalla said he came to this conclusion after crowdsourcing input through Twitter on the most disruptive technology to come and found that patient input was by far the most popular response. During the session when he delved into more technical issues of how reassessment of health technology assessments should be done, he stated it must be done “with patients at the table.”

Other speakers on the plenary panel also touched on this theme. Carole McMahon a patient, caregiver and patient advocate stated that in future patients should have new roles such as in helping design clinical trials or in designing patient surveys.

At the end of the session when asked what changes the panelists would make to improve health care, involving patients was among their answers.

Despite being a strong leader in patient partnering, CADTH was not spared criticisms from the patient community at this year’s conference.

A conference session on patient engagement that was listed with four speakers and no obvious patient presence was the subject of a critical tweet prior to the main conference that generated widespread concern from the patient community. “I find this unrelentingly frustrating,” was one response. “These kinds of presentations have the potential to actually ‘model’ what they’re allegedly talking about.”

Fear not though, the patient presence remains strong on the second day of the conference tomorrow beginning at a breakfast session at which Zal Press (@PatientCommando) will be hosting a session on the “thorny issue” of patient compensation in research and health care.

And lest people fear, the debate between patients might become too intense as it did at times at least year’s Halifax meeting, CADTH now has a meeting code of conduct that notes “harassment or disrespectful conduct do not belong at any CADTH event” including “sustained disruption of a speaker” and “grouping or isolating.”

Patient portals – windows to health care

Tweetchat_Patient_Portals_Graphic

Patient portals that offer the ability to access information from a hospital or physician provide a valuable window to at least part of a person’s health and care. But such portals remain unavailable to many and often fall short of being comprehensive.

Those were conclusions that could be drawn from a lively chat on Twitter that I helped coordinate on behalf of Health Quality Ontario (HQO) on March 20. Hosted by HQO Interim President and CEO Anna Greenberg (@AnnaGreenbergON) and respected patient advisor Alies Maybee (@amaybee), at #HQOchat the discussion saw more than 500 tweets from almost 100 participants over the course of an hour.

However, that’s just part of the story as tweets on the topic continue to be seen on the @HQOntario Twitter account days after the chat. The topic of configuring patient portals also promoted a lively exchange between a largely Ontario-based group of participants on Twitter earlier this year.

Greenberg and Maybee set the stage for the chat in a background blog that also framed the debate by asking about people’s experiences with portals, the scope of portals and their functionality. The portal discussion inevitably overlapped a discussion on electronic access to one’s health record even though this is often not a function of hospital-based portals.

The chat involved many patients, physicians, representatives from one of largest patient portals in the province (@MyUHNPatientPortal), Canada Health Infoway (@Infoway), other senior HQO staff, and others including representatives of quality care organizations and the @MyOpenNotes initiative.

As Ontario currently has no province-wide patient portal initiative (unlike Quebec, Nova Scotia and Alberta) it was not surprising that patients described a wide range of experiences with the portals. While some people talked of having up to six different portals, others said they had no access to such a portal.

Many expressed thanks for having access to what a patient portal has to offer. One of the most positively received tweets came from a specialist at the hepatology clinic at UHN who stated:

Our staff have embraced it (clinicians and support staff): fewer calls: patients happier: less printing of results for patients: patients pointing out errors. Overall very positive

Others felt the experience fell short of expectations. To quote one comment:

I have had access to a patient portal and while the concept is very exciting, I have been disappointed with the reality. The patient portal I have used has a limited # of parts of my record and lacks notes and referrals etc. so it is not a complete picture 

And Maybee commented:

I found that the hospital needs to update appointments right away. I went for an appointment listed on the portal, waited 45 mins until someone told me “Oh, that was cancelled but we are behind a lot on updating the portal.” Way to discourage us! 

The chat closed with a discussion of whether patients should be able to access their own laboratory or other test results before these have been discussed with their physician and the response was – with a few dissenters and caveats – an overwhelming ‘yes’. The same was true on the issue of whether patients should have access to their physician’s notes.

Dr. Irfan Dhalla (@IrfanDhalla), a general internist and VP at HQO commented:

Good news is that overwhelming majority of physicians are supportive of patients having access to their own notes. Some express nervousness, but usually this goes away after some experience.

It is clear that recent efforts to improve the availability and functionality of patient portals are paying dividends. But while they are useful tools, these portals managed by hospitals, clinics or medical record vendors are no answer for patients who seek a complete record of their health and care that they control.

And as another Canadian-lead discussion on Twitter a week ago makes quite clear, the numerous barriers facing patients who want to easily correct errors in their own medical record show how far the culture and environment need to change to truly make the new digital health environment patient-centred.

As Maybee commented:

We need to see the great stuff in portals all in one place — perhaps an aggregator?

To which another participant commented:

Bingo – I’m going to go one step further (sorry) but what I really want is one record, regardless of hospital, organization or discipline. If I go to 6 hospitals, I want to have a portal with the complete picture and full record. Call me a dreamer! 

And two other comments which summarize this point:

Allow patients to control their own data – we’ve spoken to thousands that want to share and export to their circle of care. System level change takes time re: connectivity, but empowering patients to share can be done sooner. Patient control = patient centred. 

While most of Canada have no access, some of us here in the know have several portals. That’s great! And it’s confusing. With @access2022 & @infoway talking to vendors now about creating the #digitalhealth highway for HC data in Canada we need #interoperability #HQOChat