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.

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)

A parliament of medicine no more: @CMA_Docs changes its governance

 

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The Canadian Medical Association (@CMA_Docs) is not immune to the dramatic changes in governance impacting governments and organizations around the world.

At its annual gathering this August in Winnipeg, the CMA’s General Council will cease to exist as “the parliament of medicine” and a major policy making body, and will be substituted with a healthcare summit aimed at attracting a much more diverse audience to advance the debate about health care in Canada.

For those who have sat through decades of often intense debate by physician representatives from across the country, on issues as important as abortion, physician aid in dying, and the future of medicare, this is a dramatic change. But, frankly it is not a surprising one as the CMA has been transitioning its policy-making processes for a few years now.

While CMA General Council often made great theatre and was guaranteed to attract front-page news for the organization, the issues discussed where often not within the strategic framework of where the organization wanted to head. The CMA has been clear it wants to broaden the funnel for collecting new policy ideas from a council of 200 plus selected representatives from its provincial and territorial associations, to the membership as a whole.

The elimination of General Council will be perhaps the most obvious but, given various announcements on the association’s cma.ca website, certainly not the only governance change being planned by the organization and voted on this year.

For instance in order to better align the CMA with its new mission statement as “empowering and caring for patients”, the CMA Board of Directors wants to add a non-physician to bring the patient representative to its Board of Directors. While a radical step for the CMA, this is in keeping with what many other medical organizations are doing.

That’s not the only change envisaged for the Board. Rather than allocating numbers of Board representatives based by number of physicians in a jurisdiction each province and territory would have just one Board member. This would shrink the size of the Board from the current size of 26 to 18 or 19 members including ongoing representation from students and residents.

The annual general meeting which was always held in conjunction with General Council will continue to expand its role for ratifying business decisions and after this year will move from August to the spring in 2019.

Those who will remember the extensive CMA governance review process that culminated in 2008 with arguably minor changes to governance will appreciate just how much and how fast the world is changing, to see what CMA will be doing this year.

Sir Charles Tupper may not be rolling over in his grave but it will be very interesting to see how CMA members do in keeping up to the speed at which their organization is moving.