Points to Ponder (#HIMSSEurope20 – Day 4)

Inspiring speeches and provocative statements marked the the fourth day of plenary sessions at the virtual HIMSS Europe 20 conference.

From the always quotable inspirational remarks by Erik Gerritsen, Vice Minister for Heath, Welfare and Sport in the Netherlands to bold statements about the role of nursing in digital health by Dr. Pamela Cipriano, 1^st Vice President, International Council of Nurses and  Dr. Crystal Oldman, chief executive for The Queen’s Nursing Institute in the UK there was no shortage of eloquence.

But I would like to feature comments from two less prominent speakers who nonetheless challenged attendees to think more deeply about both the role of digital health in care and also patient advocates.

Sergiou (l) and Dr. Serra during HIMSS Europe digital session

Both Dr. Guillem Serra and Theo Sergiou spoke at a session on community based care. Dr. Serra is a Spanish physician and CEO of MediQuo, an app with more 600,00 downloads designed to allow physicians to contact their patients by video, telephone and/or SMS. Sergiou has been a cancer patient since an early age and at 19 years old  is now a member of the NHS Youth Forum and a patient advocate.

First Dr. Serra (abridged):

When I used to practice medicine, I used to talk to my patients a lot using WhatsApp. I think that the success stories in the digital world are based in human interaction. We can see it in Instagram and WhatsApp and Facebook and even in TikTok. All of these success stories come from communities, they come from relationships. They don’t come from replacing users with chat bots. I don’t like the idea that the face-to-face visit should be copied in the digital world. I believe that the the relationship between doctors and patients in the digital world should be quite different. When I’m talking with my patients in the digital world I’m not doing the same thing that I’m doing in a face to face visit. We launched MediQuo to be the replacement of WhatsApp in health care; to be an easy way for patients to talk to doctors and have immediate access. Patients don’t have problems every day, or every week, or even every month (but) to be successful in the digital world, you have to engage the users every day, every week, every month. So we created the communities. They have the same rules of WhatsApp but are managed by health care professionals; peer to peer communications between patients that share the same interest as you, anonymously. And with this, we multiplied our engagement in the app today so that today 20% of our users who come to talk to doctors actually join these communities.

From slides by Dr. Serra

And Sergiou discussing patient advocates:

I would say I’ve kind of been indoctrinated into the healthcare mindset. So I won’t be the best person in about a year’s time to sit and be a patient advocate. I will still have my patient experience but I’m slowly become a professional. (It should be) like schools in the UK have governors, who are parents and they constantly change to keep that fresh, unique current experience there… Throughout COVID it has shown how it used to be where the only way to engage patients was to get them angry. That’s why a lot of patient advocates are very angry people. It was so much effort that only the people that were truly angry were the ones getting to the finish line. Whereas now, I’ve learned that this is changing and you’re getting a lot more people with a variety of experiences.

You may agree of disagree with some or all of the above but the speakers have raised issues worth pondering – much like every other presentation we have heard this week.

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

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.”

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

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.

The patient as expert: What does that mean?

A fast-paced tweetchat based in Ireland and held recently provided many insights into the current status of patient involvement in the health care system and the role of ‘expert patients.’

The chat was held at #Irishmed, a health-related tweetchat, hosted by Dr. Liam Farrell (@drlfarrell), an irrepressible former Irish GP, and columnist for the British Medical Journal.

Over the course of one hour and more than 1200 tweets, about 100 participants from Ireland and as far afield as the Philippines and Canada debated five questions concerning the role of expert patients and the challenges they face.

Participants included several patient advocates as well as physicians, nurses and other health care providers.

First up was a discussion of what it means to be an expert patient and whether the term is a useful one.

Many pointed out that patients are the experts in their own condition and that this needed to be acknowledged by health care providers and the system.

“It’s about valuing the expertise of the patient with lived experience alongside clinical expertise,” was one comment.

“Some patients can know more than treating practitioner about their condition. Listen to them. Learn from them,” was another. “The better informed they are, better they learn their conditions, the more they can contribute,” another person added.

However Farrell expressed concern about the growth in the number of patient advocates and the system’s need for such individuals. “Bit concerned that Expert Patients will become yet another HC profession, another layer of bureaucracy,” he tweeted.

Asked the role of expert patients, participants identified the value of involving them in everything from health policy planning and decision making to more informal roles. “…we educate strangers on our challenges, talk to the newly diagnosed and coordinate our care,” said one person.

Noirin O’Neill (@Noirin0Neill) a leukemia survivor and Irish patient advocate who participated extensively in the chat through her husband, tweeted that health care providers (HCPs) “complain about lack of resources, time, blah blah – create a new generation of patients to help.”

Others noted that all patients – not just experts – “should be listened to, informed, respected, and involved in their care.”

The chat then went somewhat off-script with a discussion of whether expert patients should be paid for playing formal roles in the health care system. Most argued that because of the time-commitment and importance of their roles, patients should be paid for this work.

“Many have suffered financially through their conditions. We should not make that worse …” was one comment.

Lack of remuneration was identified as one of the main challenges involved in being an expert patient.

Asked to enumerate these challenges one person tweeted: “trying to manage poor health with involvement activities, being taken for granted, only person in room not paid for time.”

“Juggling work, health, finances, bureaucracy, stigma, tokenism … may need more than 140 characters for this on(e)” another person tweeted.

“Being a patient advocate is a full-time job. Lots of invites, lots of phone calls, lots of talk – for no pay. Unfair,” tweeted O’Neill.

Others talked about everyone wanting patient participation at conferences but questioning their expertise or just having them serve as ‘token’ patients.

At the end of the debate, there were optimistic comments expressed such as that “ working with expert patients should lead to new era of optimism, opportunities and solutions to improve health outcomes for all.”

Finally, it was stated that those advocates currently serving as patient experts “need to send the elevator back down to the next gen of experts.”

 (Those wishing a more comprehensive overview of the chat can see the excellent Storify prepared by Marie Ennis O’Connor, (@JBCC) 

 

 

 

 

 

From #HIMSS16 to #ehealth2016 – new work, new roles and a new language

“We need the Intelligence Augmenter, stat!

“The diagnostic algorithm’s out of whack and the Transition Specialist wants to know how the interface outflow is correlating the patient’s Fitbit data into the Director of Decentralized Asset Management’s new discharge interface. And we can’t reach the Business Analyst for Patient Workflow.”

The above is not a conversation you are likely to have heard in your hospital lately.

But if you listen to Mark Casselman (@markcasselman), the CEO of COACH (@COACH_HI), Canada’s Health Informatics Association, it is the type of exchange that could be a reality in the not too distant future.

In a recent address at the #HIMSS16 conference in Las Vegas, Casselman gave a thoughtful overview of how the changing landscape around how digital health care is going to fundamentally change not only how care is provided to patients but also the roles and responsibilities of those providing that care.

Casselman noted we are currently in an environment where we have two distinct health care delivery ecosystems working simultaneously – the traditional health care delivery system based on face-to-face interactions between provider and patient in either an office or hospital setting, and the new and evolving consumer-based digital health system – the world of virtual care, apps, engaged patients and the quantified self.

“The traditional health care delivery ecosystem is mostly operating distinctly and differently from these fantastic innovations. They’re operating at different clock speeds.”

He notes that virtual care is evolving along the whole continuum from the traditional clinician/patient interface through team-based care to the new personalized patient-centred approach to care.

“It’s almost impossible for these things to be embedded in the traditional system because they’re changing so quickly,” he said.

These evolving forms of digital care and the underlying beliefs and concepts that support them are creating dynamic tension for those used to working in the traditional health care environment.

In part, he said, this is because the traditional evidence-based model of care which relies on the randomized controlled trial as the gold standard, cannot adapt quickly enough to assess and absorb the changes being brought about by digital health innovations.

To Casselman – and seemingly to the 42,000 delegates to the Vegas meeting – the new reality is one Canadian physicians, hospital administrators and all others employed in the system must start to acknowledge.

“Health care professionals, teams, and organizations must consider what novel skills and capabilities are needed to deliver virtual care effectively,” he said.

Casselman’s organization – COACH (one of the main sponsoring bodies of the upcoming #ehealth2016 conference in Vancouver) has done much to define the 65 existing roles and responsibilities involved in health informatics in Canada today and as developed a professional skills matrix for those roles.

But with the emerging digital health world, he said, there is now a need to re-examine this and determine the new roles that will be needed to provide care in the new world of health delivery.

Using artificial intelligence to augment care with algorithms, harvesting big data for insight, precision medicine, and digital care provided through mobile in the home and the community will require many different skills sets and roles –the type of currently fictitious roles noted by Casselman in my introductory vignette.

But Casselman goes beyond this onto more dangerous ground when he questions whether the patient electronic record of the future will even be the primary point around which patient care will be focused

“We’re digitizing our physiological indicators, we’re sharing them and its creating a real tension in the world of health informatics,” he noted.

Maybe the physician-owned patient record in the EMR is only a segment of what will really be needed to deliver care in the future as the patient tracks his or her own indicators and brings this to the table.

Much to think about and we can only be thankful that Canadian informatics leaders such as Casselman are giving it some thought, especially when he prefixes it all by stating “At the end of the day, it’s all about the care.”

(The summary sides from Casselman’s full presentation can be accessed here).

#hcsmca made manifest

Attitudes can turn platitudes into vision statements or words to live by.

That’s the alliterative thought I come back to when ruminating on the #hcsmca symposium held in Vancouver two days ago.

As the most solid manifestation to date of a health care social media community that has existed almost exclusively in a virtual world, anchored by a weekly tweetchat, the one-day conference can only be seen as a huge success. More than 170 registrants attended from all sectors of the healthcare world (patients included, of course) and many were the first time IRL meetings (and associated selfies).

The meeting was organized totally on a volunteer basis and the hybrid unconference core of the meeting was based on ideas coming from the hcsmca community itself (at one point, I tweeted – “Hey ma, we crowdsourced a conference”). Thousands of tweets were posted and a live feed allowed those outside of Vancouver to view and comment.

Not that the meeting lacked star power, as it hosted both Stanford MedX conference founder Dr. Larry Chu and director of the Mayo Clinic Center for Social Media Lee Aase together on the same panel for possibly the first time ever.

I blogged a few times in the lead-in to the meeting about what we hoped to achieve from all of this:

#hcsmca National Symposium in Vancouver: The Last Waltz

#hcsmca: The Last Waltz (or … Not Last Tango in Vancouver)

#hcsmca: The Not so Hidden Agenda

Whether we succeeded remains to be seen.The continued existence of hcsmca and in what form remains uncertain given the planned withdrawal of community founder and guardian Colleen Young. One of the conference organizers Robyn Sussel made a telling point when she suggested a Canadian organization or institution should step up to support hcsmca in much the way Mayo and Stanford support their successful social media initiatives.

And as for the deliberations from the meeting, many on paper can appear as rather vague statements of general intent.

“Proceed until apprehended” and “power shouldn’t equal respect’ and were the two ideas that resonated most with delegates in voting at the end at the end of the conference, rather than any concrete and practical suggestions for change.

Similarly, some of the best tweets captured what could appear as cute sayings (Colleen’s “We can improve health care 140 characters at a time” comes to mind).

But those of us who live on Twitter and within the (current) 140-character limit know that even short statements voiced as tweets can build relationships, support networks, and create environments that support and make change.

And there is nothing wrong with the conference delegates voicing overwhelming support for the rather vague proposition of including patients in all planning and initiation of social media initiatives involving health if they go back to their respective clinics, institutions or government departments and actually do this.

As I said at the start, it’s the attitude and approach to these ideas and statements that what will count.

So, we will see.

A Canadian in Vegas (#HIMSS16)

For many years I have joined hundreds of my fellow Canadians in making the annual pilgrimage to #HIMSS16 to soak up the hyperbole and find out what is on the minds of those who spend their time fixated on health information technology.

Canada may have its own quaint health care system which seems to manage to provide essential medical care to all at no point-of-care cost. But trends sweeping our neighbour to the South often impact the Canadian system and this is especially true when it comes to the world of electronic medical records, digital care, patient engagement, and what have you.

Previously I have attended as a journalist for the publication Future Practice, striving to find new amusing ways to work in prayer references when talking about HIMSS while providing a 3-4 page feature summary of the entire conference for Canadian physicians.

This year – along with two fellow Canadians, Colin Hung and Glenn Lanteigne – I have had the honour of being selected as one of the 20 social media ambassadors for the meeting. Our mission is to use social media to comment on HIMSS16 pre-, during and post-meeting as well as to engage each other and other delegates in provocative ways to promote discussion and debate on key issues at the meeting.

I want to take this opportunity to talk to other Canadian delegates and find out why they are in Vegas and what they hope to bring back that will be relevant to their work within the Canadian system. I also want to try and find the one or two sessions that usually focus specifically on Canadian innovation and have been chosen as educational sessions

Also, I already know I want to try and get a better handle on this whole ‘death of meaningful use’ situation. We in Canada – while not always using the exact language and without any government funding infrastructure attached to the concept – are starting to talk about meaningful use more and more. So, suddenly announcing the demise of the concept needs some looking into especially since many US commentators also seem unclear about whether meaningful use is quite dead yet or not.

Patient engagement is the other area in which I want to see what is new and intriguing. The Canadian system also talks a good game when it comes to patient engagement but it turns out many physicians are not keen on sharing all or even some patient data with their patients. Patient portals are still in their infancy and very, very few Canadian physicians can use email to communication with patients. Having been tied to the small but effective patient advocacy community in Canada I want to see just how things are evolving in the US and where better to do this than HIMSS.

HIMSS is always fun and informative and HIMSS in Vegas extra so. So, let’s get on with it.

 

 

#HIMSS14: The patient has no clothes

Someday, the opening speaker at the Health Information Management Systems Society (HIMSS) annual meeting will not say that this is the best year ever for health information technology.  But not this year.

 

“What a fabulous time it is to be working in health IT,” said Scott MacLean, chairman of the board for HIMSS exclaimed as he opened the world’s largest annual meeting on health IT – with an estimated 37,000 delegates and 1200 vendors in attendance.

MacLean is speaking to the converted, and the boosterism rampant at the meeting makes it difficult not to turn a jaundiced, journalistic eye to the proceedings. This meeting is filled to the rafters (or, in the case of the kilometre-long Orange County Convention Center – skylights) with either those who truly believe health IT is going to transform the health care system or those who want to sell something to the former.

Too few speakers echo American Medical Association president-elect Dr. Robert Wah who spoke to a physician symposium yesterday and stressed that health IT is just a tool and a means to an end.

Electronic health records, mobile health tracking devices, patient portals and the like have been transformed into a pantheon of icons that will benignly change the wasteful and expensive U.S. health care system into vision of efficiency and positive health outcomes.  And the latest addition to the pantheon is patient engagement through digital means.

Few would deny that patient engagement is a good thing especially since it no longer means just ensuring that patients do what doctors tell them to do. But stating that patients will be intimately involved in decisions about their own care, will have access all of their own medical records, and will even be involved in developing health care systems is one thing. Operationalizing this is quite another.

Dave deBronkart (aka e-PatientDave) told an audience yesterday that while the majority of patients will discover errors in their own records when the evaluate them, there are few mechanisms or resources in place for doctors’ offices to correct those records.

And deBronkart’s physician Dr. Daniel Sands, who has been integral in nourishing the engaged patient movement, noted at the same seminar that many physicians are unprepared for the impact truly engaged patients will have on their workflow.

While patient engagement may truly lead to more efficiencies by saving some steps in the patient visit, it is not means certain such engagement is going to lower system costs.

To quote another of yesterday’s speakers Christine Bechtel, quoting Leondard Kish, patient engagement may well be “the blockbuster drug of the century.” But surely as with too many other blockbuster drugs in recent years, it is being put into widespread use with insufficient randomized controlled trials and little monitoring of adverse events.

 

Why are you here?

Dr. Eric Topol addresses E-health Opening session in Ottawa

Why would you invite a patient or member of the public to a major conference on health information technology (IT)?

Obvious though that answer may be to patient advocates – “nothing about me without me” – it is a question that merits some consideration.

In the not too distant past – say before 2010 – health IT conferences shared the same characteristics as major conferences in any medical specialty. Clinicians, people trying to sell things to clinicians, academics, health care managers and specialized media came together to discuss new research on what would help patients best. Patients sometimes atttended but usually as “Patient with ‘x’ condition” and a useful prop for someone’s research.

As the e-patient movement gained steam, it became clear health IT conference organizers had to at least play lip service to involving patients more. You could do this most easily by inviting an iconic figure such as e-Patient Dave or Regina (‘The Walking Gallery’) Holliday to address your meeting.

But organizers quickly learned that such individuals weren’t prepared to be just tokens. Having been invited in, these and other dedicated patient advocates have changed the very nature of health care debate.

The E-health conference which just wound up its first day of proceedings in Ottawa will have its own patient hero  – double-lung transplant patient Hélène Campbell-  addressing a plenary on the consumerization of e-health tomorrow.

But beyond that what should the E-health organizers be doing?

Inviting patients to oft-arcane discussions of electronic medical record interoperability, SNOMED, or data analytics featuring some truly mind-boggling charts may be the right – albeit cruel thing to do, but who gains from it?

And if you are going to invite a Patient, are you inviting them in their own right or as a spokesperson for a disease advocacy group or a regional constituency? And are you going to pay for their attendance or have them pay their own way?

Obviously patients are a major stakeholder in e-health and must have a voice when major decisions on strategic planning about e-health are taking place. But absent politicians – who are supposed to speak for the people – it is difficult to define who has the authority or right to speak for the patient community on this issue. And if a patient does attend who are they reporting back to and why?

This is not a challenge that is unique to e-health but is true of all general policy discussions concerning health care and the health care system.

Listening to futurist physician Dr. Eric Topol in the plenary presentation to E-health this morning, it is clear that if the democratization of medicine is truly here then we need to find a way to meaningfully involve the public in conferences that have traditionally been the domain of academics, health care providers and vendors.

Maybe e-patients are a legitimate new category of conference delegate at conferences about EMRs, just as they have become in social media conferences. But surely it’s a waste of time and effort unless the information they gain from the presentations and networking translate to informed decision-making in frameworks that actually allow them a voice.