Patient engagement with muscle

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When Dave deBronkart (@ePatientDave) wanted access to his own medical record several years ago in the US, he didn’t just fill out a form requesting this information or politely ask the hospital involved, he went public in a big way, loudly demanding “Give me my damn data!”

While his act was not unique it can arguably be seen as initiating a new era of the muscular type of patient engagement currently prevalent in the US. These are patients who are not prepared to sit meekly and wait for an invitation to participate in decisions about their own health care or the health of patients in general.

Engaged patients are demanding their place at the health care decision-making table and have little patience for policy makers or conference organizers who want to keep discussions of patient engagement at theoretical level.

Look at the growth of the #patientsincluded movement in which conferences globally are being told they should include patients at all levels of planning and presenting health care information in a way that accommodates patients.  Anyone who dares hold a conference on patient engagement without having patients on the planning committee and speaker list risks being loudly shamed on social media. Even one element of #ehealth2017 has not been spared such criticism.

Similarly, recent discussions on social media are asking very pointed questions about why patient are often the only ones at the table who are not being paid for their time to provide their input.

This new form of patient engagement is transforming how health care is being planned and delivered in Canada but frankly we still trail the US in truly integrating this approach. Canada has several engaged patient leaders but none with the profile of their American counterparts.

Which bring us to the June 2 pre-conference symposium on Consumer Digital Health at #ehealth2017.

The keynote speaker will be Lygeia Ricciardi (@Lygeia), a US based expert in consumer engagement and digital health. Lygeia established and directed the Office of Consumer eHealth at the Office of the National Coordinator for Health IT (ONC) in the US federal government and is a compelling speaker. The presentation promises to deliver an update on major emerging trends in patient engagement

COACH, Infoway and the Canadian Institute for Health Information (CIHI) will follow Ricciardi’s keynote address with breakout sessions on different aspects of empowering healthcare consumers. This symposium should provide an invaluable snapshot of where Canada will be heading in the next few years.

Health Quality Ontario (for which I work), is currently one of the national leaders in providing the tools and infrastructure to meaningfully involve patients in health care decision-making.

It’s not a straightforward or easy task.

As Health Quality Ontario CEO Dr. Joshua Tepper wrote in @HealthyDebate blog post two years ago, “simply ‘commanding’ or ‘expecting’ health system providers and leaders to engage with patients is unrealistic.

In addition, he noted, “the patients we need to hear from the most are often the hardest to reach. Those who face economic, social, language, cultural, physical and psychological challenges to engagement will need thoughtful and respectful partnership efforts.”

For all of this, he concluded “courage is going to be a pre-requisite.”

Even as more patient involvement in health care planning and delivery is mandated in legislation and becoming embedded in the culture of quality care in Canada, hearing from US experts like Ricciardi is important to help us map where things are heading.

In a digital world, health care delivery models may be determined by jurisdictions but trends such as patient engagement effortlessly cross borders and Canada’s engaged patient community are quick to learn from their peers elsewhere and apply the lessons here.

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