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.