Ay, Here's the Rub

Ever sat in a meeting in a health care setting and struggled to find a space to get a word in edgewise? Or if you did say something, you are immediately interrupted or totally ignored? Yah me too, but only for the past 21 years.

There’s much more to patient engagement that simply inviting people to the boardroom table. I’ve been thinking about how existing groups make room and do not make room for new voices in their formal structures.  I'm interested in how people are treated during the engagement.

Breaking into Cliques

As a patient, I’ve been a member of councils, attended committee meetings, sat on conference panels and participated in strategy sessions. My lord, it is hard to break into preexisting groups and cliques. If you dare challenge the status quo you threaten those who benefit from the keeping things the same and it is both fascinating and horrifying to watch people from the establishment band together to shut down dissenting voices.

This essay is a culmination of my experiences over the past 20+ years as a patient advocate, and a call for brave people to stand up and be allies for the those who hold the contrary voices in health care.

What is Homophily

I’ll draw upon this brilliant video from Barry’s Economics that explains the concept of homophily, which is why people like people like themselves.

https://www.youtube.com/watch?v=Nm_L9VCBJ_E

Barry Ferns talks about how people in positions of influence and power are similar. He's UK-based and details how leaders there typically come from a private school education, have graduate degrees and often hail from wealthy families who gift them financial support. He says elite ecosystems are built inside this specific intellectual world, which values class and high IQ above anything else.

When these people get together in a room, Barry says:

This is not a mix of perspectives. It is a reunion. It’s an echo system.

These homogenous groups exist in health care too. They are the people who make policy decisions that deeply affect patients, caregivers and staff. Their very homogeneity is is exactly why you need diverse patient and staff engagement.

At the boardroom table, leaders look down on people like me. I am a layperson, come from a lower middle-class background, have had no family support and possess a measly liberal arts undergrad degree. Now consider intersectionality on top of this. There is compounding distain of patients who are members of groups who are already marginalized by systems. These folks are dismissed even quicker by those in power.

The Rub

Our health care mess is a complex problem. In order to solve complex problems, you need different angles on the problem. Ay, here's the rub.

For the master's tools will never dismantle the master's house. -Audre Lorde

Barry gives an example from Liu Hong and Scott Page about how different groups solve difficult problems. In a comparison of a group of elites vs. a group of regular people with differing backgrounds and smarts, the diverse group is more successful at solving complex problems because they explore more of the solution space. 

The group of regular ole people come up with more solutions for the same problem. The elite team approach the problem with the same homogenized outlook and offered up just one potential solution.

Groups focused on health care innovation fail because of a lack diversity in their collective thinking, experience and perspective. 

Diversity is not just nice to have or the morally right thing to aspire to. Diversity is absolutely essential to fix this mess we are in.

Who Built the Box?

People who belong to the establishment are rarely motivated to innovate or transform. They can hunker down, protect each other, and are loyal to the system that signs their cheques. Their solutions are based on conformity and peer pressure, not innovation.

You cannot think outside the box if you built the box.

Talk about confirmation bias! Watch out for those who validate each other’s point of view while guffawing and slapping each other on the back.

Be an Ally to Outsiders

That’s why outside perspectives are both valuable and dangerous to people committed to the status quo. And this is precisely why people with outside perspectives need allies at these tables.

Dissenting people are quickly dismissed as irrelevant because outside voices are a threat to conformity. The quicker someone is dismissed, the more of a threat they are.

I’ve seen this over and over again in my career. A nurse in a room of physicians. An admin support person in a meeting of managers. A patient in a boardroom of executives. Even patients dismiss other patients who do not ‘behave.’ The patients who make a living doing patient engagement become professionalized and part of the system. They have assimilated into the corporate culture, and are no longer effective advocates because their rabble-rousing nature has faded away.

Back to Barry Ferns. The solution to homophily is to ask: Who is allowed to talk? Who is allowed to debate? Barry recommends going beyond the echo chamber of the regular canon of experts.

Truly Embrace Diversity. I Mean, for Real This Time.

What does this look like in patient engagement?  It means making the time to recruit people who have different backgrounds than you do. It means not pre-determining who is ‘smart’ and who is not. It means not looking down on people who are of a different socio-economic class or political leanings. It means attracting people who may be unfamiliar with the boardroom table. It is your work to build another table with them, or to make them comfortable enough at your table to speak up without fear of being shut down.

Reach out to the people and don't expect them to come to you. Be aware of your own biases, and of the human tendency for homophily. Resist the temptation to surround yourself with people just like you. A group of people who are not ‘expert’ will offer a lot more in terms of innovation that a homogenous group of highly-credentialed leaders.

We need allies to make space for the soft voices, the under-represented voices and the contrary voices. Otherwise these outsiders will be bulldozed and never heard from again. And that's a damn shame.

Health care innovation has regressed because some leaders are tightly hanging onto their top-down, authoritarian stance. They adopted this during the pandemic. Authoritarianism feeds on yes-men and does not permit alternative points of view.

So here's the million dollar question: Where do you find transformation in health care? 

The answer is that transformation resides outside the boardroom, not inside the echo chamber. If you truly want things to change for the better, fight against homogeneity with all your might.

If you don't, there will be no improvement, only regression. Our health system will continue to collapse, as it does not serve patients, caregivers or staff.

It serves only the elite people who built it.

ps: This was 100% written by a human (me).