Patient engagement with muscle

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.

Broken windows in the house of medicine

At a time when physicians are feeling besieged from all sides it hardly seems fair to write about the lack of civility demonstrated by some members of the profession on social media.

But it’s still an important issue that needs to be addressed – with the caveat that no profession or segment of society is blameless when it comes to such behavior and the focus is due to the focus of this particular blog.

The post is prompted by a recent workshop held at the annual Canadian Conference on Physician Leadership (#CCPL17) held in Vancouver titled “Professionalism and respect within the profession: demonstrating leadership and creating a safe space for debate”.

The good news from the discussion: social media is not to blame for outbreaks of incivility and bullying which can occur between physicians. The bad news? Incivility appears to be rampant throughout medicine and has yet to be satisfactorily addressed.

The impetus for the workshop was a fracas on social media last summer associated with a vote on a proposed fee deal for the Ontario Medical Association which saw a leader of the OMA student association subjected to threatening social media posts, and the subsequent public attention drawn to the dispute,

The decision was taken by conference organizers in Vancouver not just to focus on physician behavior on social media but rather to look at incivility and bad behavior in medicine in general and work being undertaken by the Canadian Medical Association (@CMA_docs) to address this in the spirit of professionalism.

During the discussion, Dr. Michael Kaufmann, the recently retired head of the physician health program in Ontario noted he dealt with problems caused by incivility between physicians on a weekly basis. It was also stated that hundreds of physicians across the country have been or will found guilty of unprofessional conduct by demonstrating disruptive behavior.

“The lack of civility in the medical profession is mindboggling,” is how one physician audience member described the scope of this behavior. Or, as Dr. Kaufmann put it more poetically, “we have some broken windows in the house of medicine.”

So, while social media is clearly not to blame for doctors behaving badly the point was also made that social media can breed incivility by prompting spur-of-the-moment outbursts, misinterpretations due to the sketchiness of the posts, and in some cases, the dimension of anonymity.

With the medical profession feeling under attack from all sides, views that break ranks with the majority are going to be challenged, often emotionally. Students and recent graduates are often the most common targets because they are said not to understand the realities of the situation.

The problem is that social media is not designed to promote measured, respectful debate.

“We will tell you when you can speak and what you can speak about,” is how panel member Dr. Dennis Kendel (@DennisKendel), a Saskatchewan physician and active tweeter described the response when he was seen as questioning that pro-physician unity.

Sadly, social media continues to be severely underused by physician as a professional tool for information gathering and networking (despite being used by peer leader in many areas).

It is also clear that the rules of engagement on social media platforms by their very nature can aggravate instances of poor communication and cause difficult situations to deteriorate.

Despite encouraging social media use at the Vancouver conference, organizers and speakers appeared very cognizant of this. Witness the fact that more than once, delegates were cautioned against tweeting certain remarks or asked to do so with a degree of exquisite sensitivity rarely taught professional journalists let alone well-intentioned civilian commentators.

Well, as the late Hunter S. Thompson might have remarked, this particular missive seems to be drawing to a close without pulling together all the narrative threads as required.

So:

• It’s a tough time to be a physician
• It’s a tougher time to be a young physician with unpopular views
• It is to be hoped the CMA initiative will have an impact
• Social media is impacting discourse across society in positive and negative ways we have yet to fully figure out.