Patients at #HIMSSEurope18: From ‘a’ to ‘the’

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To have the patient voice presented articulately from the podium isn’t all that unusual at medical and health conferences these days.

However the fact that this occurred at a major digital and health information technology conference – until recently the domain of companies and organizations wanting to do things to and for patients (often for money) rather than with them – is worth noting.

To its credit, the HIMSSEurope/Health 2.0 meeting in Sitges, Spain did not just have prominent patient advocates such as Marie Ennis-O’Connor (@JBBC) and Anne-Miek Vroom (@annemiekvroom) speaking at plenary sessions but throughout it also reflected a new paradigm of providing health care services and products that patients want, delivered where and when they want them.

Although some feel more can be done: “The most powerful force in health care innovation (the patient) is yet to be unleashed,” said Ennis-O’Connor.

“To me, empowerment is not just having an app with all your health care information, it is about being part of the system,” said Miquel Bru, VP of business development for Made of Genes, during a session on precision medicine. As Vroom pointed out in her address, you don’t need a program or project to work with patients, just ask their opinion and incorporate them into the workflow.

It was Vroom who also pointed out that while virtual care, mobile apps, and telemedicine innovation are all being applauded as breakthroughs for patient care they do not automatically improve the patient experience and can still be challenging for those with disabilities.

In his keynote address, Dr. Robert Wachter, chair of the University of California, San Francisco department of medicine and oft-time critic of electronic records and their impact on physicians, noted that the “perfect patient” ready, willing and able to adopt digital tools to manage their care is not common. Instead, he said, digital tools and information will have to be customized to accommodate patient preferences and knowledge levels.

“There is no such thing as a ‘one size fits all’ patient,” said Ennis O’Connor who also noted there is some concern about the growing gap between digitally literate and engaged ‘super patients’ and those who are not.

While the conference was filled with speakers discussing tailoring their digital solutions to what patients really wanted, Ennis O’Connor challenged people to act on truly involving patients in their work. She said that patient engagement has become a leading theme at conferences (including this one) but said there has been no significant movement to change this rhetoric into a tangible reality.

However, Lucien Engelen (@lucienengelen), a global digital health strategist and patient engagement champion, who served as master of ceremonies for the Sitges meeting said he perceived the tendency to involve ‘token’ patient has been decreasing while meaningful involvement of patients at conferences has been increasing.

And while the yardstick may not have moved as much as patient advocates may wish there was a definite sense here that digital health innovators, policy makers, and providers are starting to view patients as partners and not simply subjects for the next shiny new digital healthcare toy.

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Something is happening here … #HIMSSEurope18

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You try so hard but you don’t understand
Just what you will say when you get home
Because something is happening here but you don’t know what it is
Do you, Mr. Jones?

                                             Ballad of a Thin Man: Bob Dylan

The problem with a Health Information Management Systems Society (HIMSS) meeting – any HIMSS meeting – is that there is so much going on at one time that it is impossible to craft it into one coherent narrative.

That is the challenge with HIMSS Europe 18 currently underway here in Sitges near Barcelona, Spain as hundreds gather to discuss the latest in digital health and health information technology and to network, network, network. And it’s doubly challenging as this meeting is being held in conjunction with Health 2.0, the health innovation conference recently purchased by HIMSS.

(Now wait a minute, wait a minute you say – you get to go all the way to a resort hotel in Spain, with a clothing optional beach within 5 minutes walk, where they serve wine at the some conference buffet luncheons, only to cop out and say you can’t write coherently about it. Patience please).

As a social media ambassador here and lively live tweeter I can supply you with an endless number of insightful tweets or sound bites from just the first 24 hours. For example:

“We have gone from a paper world to a digital world in a short period of time”: Dr. Robert Wachter

“There is a lot of tokenism in health(care) innovation, and some think you can change or even fix health(care) overnight. It is not about technology, nor about the process, it is about changing the culture of an organization”: Lucien Engelen

“Pay patients and value them as the experts that they are”: Marie Ennis-O’Connor

But while I think these tweets provide a useful running commentary of the meeting they – and even the twin meeting hashtags #HIMSSEurope18 and #health2con – provide only a partial and episodic picture of what is going on.

Individual presentations or sessions are also noteworthy. For instance I have never heard as passionate a presentation supporting the role of nurses in the future digital world as that given by Angelien Seiben and Shawna Butler from Radboud University Medical Center. And Dr. Jordi Sorreno Pons a GP and CEO of the Universal Doctor app jammed so many ideas into his 8 minute presentation on future developments in medical innovation that it was almost incomprehensible.

The big subject areas – patient engagement, big data, artificial intelligence – are all given their own sessions or streams here.  But in the time available they tend to focus on specific projects or regional initiatives.

Certain things have changed from HIMSS or eHealth meetings held 15 or 20 years ago. The digitization of patient records is now a reality and not a vision and patients are not only discussed but included (#patientsincluded) as presenters in their own right.

But as to what all of this means for the future of digital health in Europe or worldwide – we are too much in the moment to have a clear picture given the complex nature of health systems and the endless number of variables that impact such systems.

For the numerous people here with an start-up to promote or an niche application to profile the meeting is a far simpler place.

(This is the first of what we hope will be a series of posts from Sitges)

Radiology and AI: An algorithm took my job

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Radiologists and those who love them sometimes seem to be some of the most insecure people around and radiology seems consistently voted the specialty most likely to be made defunct by modern technology.

In Canada, this perception has been voiced repeatedly over the past decade or two, first with the perceived threat of radiologists on the other side of the world working during our night to interpret scans and provide results when Canadian radiologists are sleeping, and now with the widespread attention given to artificial intelligence (AI) and deep learning and its potential uses in health care.

At last year’s annual meeting of the Canadian Association of Radiologists (@CARadiologists) I pondered whether this year’s meeting of that organization would be leaving it too late to discuss the significant issues revolving around AI and radiology (see my post “(A) I, Radiologist”) given the speed with which the field is advancing.

I need not have worried.

Last week the CAR released a white paper on the role of AI in radiology in advance of its annual meeting this year to be held April 26-29 on the theme of AI in radiology with the learning objectives including: discussing the recent changes that have occurred in imaging as a result of the implementation of artificial intelligence, deep learning, and machine learning in imaging workflows and; discussing the opportunities of big data and artificial intelligence to improve on the diagnostic performance and predictive value of imaging.

As an extensive overview of the topic, the CAR document squarely confronts the main issue at hand, namely that “recent breakthroughs in image recognition introduced by deep learning techniques have been equated in the media with the imminent demise of radiologists.” The authors go on to state rightly that the work of radiologists goes far beyond that of just correctly interpreting images.

“… the complex work performed by radiologists includes many other tasks that require common sense and general intelligence for problem solving–tasks that cannot be achieved through AI. Understanding a case may require integration of medical concepts from different scientific fields (eg, anatomy, physiology, medical physics) and clinical specialties (eg, surgery, pathology, oncology) to provide plausible explanations for imaging findings. Such tasks accomplished by radiologists on a daily basis include consultation, protocoling, review of prior examinations, quality control, identification and dismissal of imaging artifacts, cancer staging, disease monitoring, interventional procedures for diagnostic or therapeutic purpose, reporting, management guidance, expertise in multidisciplinary discussions, and patient reassurance”

However, the white paper’s authors also fully appreciate the potential of AI and state that “to remain current Canadian radiologists will need to follow and contribute to health care AI research and development, embrace the changes in workflow that will be required to support the implementation of clinical AI and adapt to changes in their practice that will improve care of their patients.”

So, while the demise of radiology (again) does not seem imminent, the white paper will bear close reading by Canadian radiologists who wish to remain relevant with some of the most significant and fundamental advances in medicine currently underway.

(Image courtesy of the Canadian Association of Radiologists)

Digital health: A manifesto for the times

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In 2008, Dr. Gunther Eysenbach, editor of the Journal of Medical Internet Research published a paper on the nature of what he termed Medicine 2.0 – and this paper formed the framework for the first World Congress on Social Media, Mobile Apps, Internet/Web 2.0 held in Toronto.

Eysenbach noted that “recent advances in web technologies and user interfaces have greatly changed the design, appearance, stickiness, and pervasiveness of Web applications, and in many cases transformed the way users interact with them. Perhaps equally importantly, it also has changed the expectations of users.” In addition, he said, these advances have coincided with the development of personal health records “with far-reaching consequences for patient involvement, as the gravity shifts away from health care providers as the sole custodian of medical data.”

Eysenbach talked about five major aspects (ideas, themes) emerging from Web 2.0 in health, health care, medicine, and science, which would outlive the specific tools and services offered: social networking, participation, apomediation, collaboration, and openness.

Among the attendees at the 2008 meeting was a Hungarian medical student Bertalan Meskó (@berci) who was to graduate the following year. A year later at the same conference, also held in Toronto, Dave deBronkart (@ePatientDave) gave his first major presentation in Canada around his rallying cry of “Give me my damn data”.

Fast forward a decade: Dave deBronkart, a stage IV cancer survivor, is probably the most high-profile patient advocate there is and Meskó is a medical futurist speaking to audiences worldwide. Together they have just published what they call a Digital Manifesto with six declarations they believe “are essential for correctly understanding what is and isn’t happening in digital health.”

You can read the manifesto yourself – it’s not long and speaks to much that will resonate with those working in digital health or with patient engagement. It talks about behavior change and educated and informed patients working with health care providers to take control of their own health using the manifest new technologies now available.

What I am struck by are the similarities between the Eysenbach piece and the manifesto – despite the gap of 10 years and the very different tone and purpose intended for the documents.

Both reference the significance of new digital tools and platforms and their importance as enablers of change, or in deBronkart and Meskó’s words: “A future where old hierarchies tumble down, the paternalistic patient-doctor relationship is no longer needed and disruptive technologies enable the democratization of care by democratizing knowledge. A future where all these are in place due to cultural transformation facilitated by disruptive technologies.”

The documents and these past 10 years also represent the dedication and common vision shared by many of those who work with digital health – be they patients, providers or researchers. In addition to Meskó and deBronkart, many of those who spoke or participated in the 2008 and 2009 conferences have remained active in digital health research.

“… we could say that medicine 2.0 is what ehealth was supposed to be all along”, Eysenbach wrote 10 years ago. deBronkart and Meskó say “A manifesto can …kindle new thinking among those who do see the light.”

 

 

#Ehealth2018: Beyond the keynotes

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Ehealth 2018 to be held in Vancouver, May 27-30 continues to occupy an unchallenged position as Canada’s premier conference dealing with health information technology (IT) and digital health.

Now in its 18th year, the conference shines a light on where Canada stands when it comes to the introduction and implementation of new digital health technologies.

While the keynote speakers at the meeting provide the ‘wow factor’ for those in attendance it is the smaller focused concurrent sessions where one can get a truer sense of what is really going on in research and at the front-lines of care.

A brief review of the sessions and presentations on offer at e-Health 2018 offers some intriguing hints of how the health IT landscape is evolving. Bear in mind the caveat that session titles can often be misleading and relying on titles rather the entire abstracts can often lead – as many conference delegates have learned to their sorrow – to deep disappointment when the talk does not live up to expectations.

This year, even the session headings at e-Health 2018 are more helpful as they tend to be more explicit than most. For example, there is a session titled not just ‘Telehealth’ but “Geography and Telehealth: It’s Not Always Distance”. However, beware over-imaginative session copywriters who can come up with a title such as “Labs, Drugs and Rock and Roll”.

From the session headings it is clear that top-of-mind IT and digital topics such as block chain, telehealth and big data are high on the Canadian agenda this year just as they are south of the border.

Individual presentation headings – as always – range from the meaninglessly vague to the intriguing. It’s worth taking a look at the presenters as well, as this can point to some talks worth bookmarking.

For instance, Dr. Jeremy Theal from North York General Hospital, a leader in computerized physician order entry in Canada is scheduled to talk about “A Novel Provincial Approach to Implementing Advanced Hospital Information Systems”. Long-time digital health stalwart Glenn Lanteigne will be giving a talk titled “Blockchain in Healthcare – Separating the hype from reality,” and another noteworthy presenter will be eConsult pioneer Dr. Erin Keely talking about “Provider Experience – the Fourth Aim of Innovation in Healthcare Technology”.
With patient-centred care once again at the forefront there are also several presentations that seem to merit a look including these two:

  • The Secret is Out: Achieving High Patient Portal Adoption – Selina Brudnicki, University Health Network.
  • Engaged Patients Are Driving Healthcare Innovation and Efficiency – Shannon Malovec, TELUS Health.

As noted above, it is always buyer beware when it comes to picking presentations by title alone but for those of us interested in the use of social media in health care it might be difficult to resist Nishila Mehta’s scheduled presentation on “Data Mining Twitter to Detect Prescribing Cascades: A New Concept.”

However, as everyone has their own concerns and interests it is worth combing the program carefully to find those presentations that provide insights and new information for you personally.

Patient engagement with muscle

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When Dave deBronkart (@ePatientDave) wanted access to his own medical record several years ago in the US, he didn’t just fill out a form requesting this information or politely ask the hospital involved, he went public in a big way, loudly demanding “Give me my damn data!”

While his act was not unique it can arguably be seen as initiating a new era of the muscular type of patient engagement currently prevalent in the US. These are patients who are not prepared to sit meekly and wait for an invitation to participate in decisions about their own health care or the health of patients in general.

Engaged patients are demanding their place at the health care decision-making table and have little patience for policy makers or conference organizers who want to keep discussions of patient engagement at theoretical level.

Look at the growth of the #patientsincluded movement in which conferences globally are being told they should include patients at all levels of planning and presenting health care information in a way that accommodates patients.  Anyone who dares hold a conference on patient engagement without having patients on the planning committee and speaker list risks being loudly shamed on social media. Even one element of #ehealth2017 has not been spared such criticism.

Similarly, recent discussions on social media are asking very pointed questions about why patient are often the only ones at the table who are not being paid for their time to provide their input.

This new form of patient engagement is transforming how health care is being planned and delivered in Canada but frankly we still trail the US in truly integrating this approach. Canada has several engaged patient leaders but none with the profile of their American counterparts.

Which bring us to the June 2 pre-conference symposium on Consumer Digital Health at #ehealth2017.

The keynote speaker will be Lygeia Ricciardi (@Lygeia), a US based expert in consumer engagement and digital health. Lygeia established and directed the Office of Consumer eHealth at the Office of the National Coordinator for Health IT (ONC) in the US federal government and is a compelling speaker. The presentation promises to deliver an update on major emerging trends in patient engagement

COACH, Infoway and the Canadian Institute for Health Information (CIHI) will follow Ricciardi’s keynote address with breakout sessions on different aspects of empowering healthcare consumers. This symposium should provide an invaluable snapshot of where Canada will be heading in the next few years.

Health Quality Ontario (for which I work), is currently one of the national leaders in providing the tools and infrastructure to meaningfully involve patients in health care decision-making.

It’s not a straightforward or easy task.

As Health Quality Ontario CEO Dr. Joshua Tepper wrote in @HealthyDebate blog post two years ago, “simply ‘commanding’ or ‘expecting’ health system providers and leaders to engage with patients is unrealistic.

In addition, he noted, “the patients we need to hear from the most are often the hardest to reach. Those who face economic, social, language, cultural, physical and psychological challenges to engagement will need thoughtful and respectful partnership efforts.”

For all of this, he concluded “courage is going to be a pre-requisite.”

Even as more patient involvement in health care planning and delivery is mandated in legislation and becoming embedded in the culture of quality care in Canada, hearing from US experts like Ricciardi is important to help us map where things are heading.

In a digital world, health care delivery models may be determined by jurisdictions but trends such as patient engagement effortlessly cross borders and Canada’s engaged patient community are quick to learn from their peers elsewhere and apply the lessons here.

(A) I, Radiologist

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Born of the discovery of the x-ray by Wilhelm Roentgen in 1895, the specialty of radiology is suddenly facing perhaps its greatest challenge with advent of artificial intelligence (AI) and machine learning.

Radiologists who have adapted to all manner of new diagnostic modalities over the generations now find themselves facing the prospect of machines which read and interpret imaging results quicker and more accurately than they can.

The Canadian Association of Radiologists (@CARadiologists) recently held its 80th annual meeting in Montreal and among the posters was one advertising that next year’s meeting would focus on AI. One wonders, given the speed with which AI and other technologies such as 3D printing are transforming radiology and medicine in general, whether next year is maybe too late to grapple with the issues raised.

The program committee of the CAR may have unconsciously acknowledged this as many sessions at this year’s meeting dealt with advanced technologies and at least two speakers dealt directly with the future role of the radiologist.

In addition, one of the highlights of the exhibit hall was IBM Watson Health (@IBMWatsonHealth). Last year, IBM created the Watson Health medical imaging collaborative, a global initiative with more than 26 leading health systems, academic centres, and imaging companies (they are currently looking Canadian participants) to bring cognitive imaging into daily practice. Earlier this year, IBM launched the Watson Imaging Review to reduce practice-pattern variation and reconcile differences between a patient’s administrative record and his or her clinical diagnosis.

One of the IBM staff was heard telling a CAR delegate, Watson “is not here to take your job away, it’s here to make your job easier.”

Presentations on AI and machine learning were matched by discussions of 3D printing, another technology currently transforming radiology and health care delivery.

Dr. Frank Rybicki, chief of radiology at the University of Ottawa and chief of medical imaging at The Ottawa Hospital, gave a comprehensive overview of how 3D printing is transforming many areas of medicine. The Ottawa Hospital recently opened the first 3D printing program based at a Canadian hospital.

Dr. Rybicki predicted that soon every hospital would have such a program as 3D printing moves from niche interventions to a leading role in reconstructive surgery, and cardiovascular and neurological interventions as well as supplying models to improve physician-patient communications and reducing peri- and post-operative complications.

“3D printing is the information delivery system of the current radiology generation,” he said, such as the young radiologists from Memorial University of Newfoundland who presented a paper showing the value of 3D printing of blood vessels to help educate the public and medical students.

It was a past-president of CAR, Dr. Ted Lyons from the University of Manitoba who bluntly outlined the future facing radiologists as a result of all these changes.

He noted that one of the fundamental roles of radiologists – reading and interpreting x-ray film – has almost already totally disappeared with the advent of PACS (picture archiving and communication systems).  By 2035, he predicted, all x-rays, CT scans and MRIs will be read and interpreted by machines.

The way forward for radiologists is twofold according to Dr. Lyons; firstly by becoming more than a “faceless name” who interprets images in a darkened room and being more directly involved and engaged with other clinicians and patients at the bedside. The second fundamental need, he said, is for radiologists to become data scientists and lead the integration of AI into radiology practice.

Dr. Lyons presentation was complemented later in the meeting by a presentation from a SickKids Hospital, Toronto radiologist Dr. Erika Mann who reiterated how radiologists need to become more patient-centred if they wish to remain relevant.