Privacy vs. the public good: The delicate health data balance (#HIMSSEurope20 – Day 2)

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“Trust and transparency.”

One couldn’t write a summary of the second day of proceedings at the virtual HIMSS Europe 2020 conference without starting with those words. The phrase was used repeatedly by speakers during keynote sessions of the day which focused squarely on health data and how it needs to be shared to support population health and improve health outcomes.

Much of the unspoken framework for the discussion was provided by legislation specific to the European Union governing the collection and sharing of patient data, especially the General Data Protection Regulation adopted in 2018. But common themes of the need for governments and health organizations to have the trust of patients and be transparent in their planned uses of personal health data would certainly resonate with North American audiences.

“Trust is not something you can change in weeks or months. You must show again and again that health data is protected and will be used judiciously,” said Dr. Ran Balicer, professor of public health and founder of the Clalit Institute in Israel.

While all sessions stressed this theme it was clear the sentiment of this particular conference audience favoured data-sharing for secondary purposes. Polled on whether to enable efficient global data collaborations, privacy regulations should be temporarily adjusted and lowered in times of pandemics and health crises, 46% of respondents replied positively, with others evenly split between disagreeing and not knowing.

“Our new world in the use of data … really depends on the free availability and interchange of data between different organizations” said Dr. Charles Alessi, chief clinical officer for HIMSS. “Data is the fuel for change in our health care system and we want to make sure we have good access to that data,” reiterated Petra Wilson, European program director for the Personal Connected Health Alliance.

Sessions on population health and precision health demonstrated the scope of health data has broadened significantly in recent years to incorporate not just lifestyle data but also information on the social determinants of health. Dr. Mahmood Adil, medical director of Public Health Scotland, gave a brief but compelling presentation about how Scotland is gathering these data regionally and using it to improve health outcomes.

While a discussion on precision health and the use of algorithms to support personally driven decision support and provide proactive care sounded futuristic, Dr. Balicer says this is already a reality.

As has been the case since the beginning of the week, the COVID-19 pandemic coloured the nature of proceedings. Once again, the emphasis was on the positive impact of the pandemic – in this instance, evidence that public willingness to share their personal health data appears to have increased since the onset of the pandemic to speed tracking and help in vaccine development.

Mary Harney, former minister of health and children in Ireland, said people should view the sharing of their personal health data as an investment in themselves as it would contribute to initiatives resulting in better health.

Following another day once again very short on direct patient participation, the sessions ended on a positive note for patients.

“Keep fighting for your data,” said Dr. Erwin Böttinger, professor and chair of the Digital Health Center, Hasso Plattner Institute, reiterating a point made earlier by Dr. Mark Davis, chief medical officer for IBM Watson Health who said it was fundamentally important for individuals to have control of their own health data.

(Photo: Helsinki Central Station – in honour of the city where this conference was to be held)

COVID-19: It’s all silver lining (#HIMSSEurope20 – Day 1)

Cheerleading about the benefits of digital health defines any Healthcare Information Management Systems Society (HIMSS) conference – and #HIMSSEurope20 is certainly no exception.

Having been postponed from June and moved from Helsinki into the virtual world because of the COVID19 pandemic, what makes this year’s HIMSS Europe conference unique is that there is actually lots of cheer about in the digital health community right now.

The requirement that health care systems transform from in-person to virtual visits to maintain physical distancing and the safety of both patients and physicians as well as other providers has forced health care around the world to embrace virtual care and digital health solutions to an unprecedented degree.

This silver lining to the current pandemic was the main theme throughout the first day of plenary sessions at the conference hosted in a sophisticated digital setting with attendees from 98 countries around the world.

This was not the venue to discuss the COVID19-related death tolls in Italy and Spain and elsewhere, the elderly dying unattended in long-term care homes, and the ominous threat of the second wave. Rather, hyperbole ran rampant as representatives from the UK to Portugal discussed how physicians and hospitals adapted to the new reality within days if not weeks. “No country would have been able to manage COVID without digital health” said Lav Agarwal, joint secretary of the Indian ministry of health and family welfare.

Second to virtual care as a topic were examples of how electronic records and patient portals facilitated the efficient management of COVID testing and contact tracing and bed management in critical care. However, speakers such as Dr. Tracy Pankhurst, chief clinical information officer at University Hospitals, Birmingham also noted that the public would be “horrified” at the inability of many systems to collect and process the most basic data needed measure the pandemic in part because of the lack of interoperability and common definitions.

To their credit, many speakers from HIMSS CEO Hal Wolff and World Health Organization regional director for Europe Hans Kluge on down touched on the inequitable impact of COVID and the disproportionate toll it has taken on the disadvantaged – coupled with the need to make sure digital solutions bridge rather than widen this gap.

In panels weighted heavily with family physicians and critical care specialists, the key role primary care physicians have played in adapting their practices to digital visits and in managing the pandemic was also an underlying theme. Striking was the situation in Catalonia detailed by Dr. Josep Vidal-Alaball, head of the Central Catalonia Innovation and Research Primary Care Unit. He described how many small family physician offices had to close as physicians and staff went into quarantine while at the same time family physicians had to assume care in long-term care homes.

Another digital health theme touched on first again by Wolff was the need to balance the protection of individual privacy with the desire to have aggregate data to support population health initiatives – a discussion which seems to have dropped into the background in Canada.

Once again in the early stages of this conference, the leading positions held by Finland and Estonia in implelmenting digital health solutions as well as impressive scaling of digital health in the British National Health Service were in evidence. But it was also noted that around the globe the implementation of telemedicine has been inconsistent both between countries and within jurisdictions.

While Canada is obviously not a major player in this Eurocentric conference it is interesting that we are one of the only two non-European countries to have a pavilion on the virtual 3D exhibition floor, showcasing digital health companies based here.

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.