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.”

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

Sitges2

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.