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Connecting with your patients

You’re Doing It Wrong!

It starts innocently enough. A group wants to do something to improve things for healthcare.

“But, how do we do it? How do we do patient engagement? How do we make the team work for this?”

I get this question all the time – clinics, communities, charities, project teams – they’ve all asked. It usually follows with a whispered note of, “people think we have this figured out, but we don’t, and I have to fix it ASAP.”

The thing is, connecting with patients (or any group related to your work) is easier than most folks make it and, most over complicate it and fail by over architecting the process.

If your goal is to invite patients to the event you are hosting later on or send something to a patient group to review after it is crafted and passed by some governance structure, you aren’t including stakeholders, you are checking in with them. That’s not going to work and give you the success you need for your engagement. Worse? Some groups have been bringing along patients to include them for “checking the box” on a grant or project design effort and then they make movement to exclude them from planning, implementation, or ideation once things get going.

And patients? If you have a group working on a project and you are not including clinicians or plan to check in with them at the end of things, that also won’t work.

Folks, don’t be this kind of group.

To truly influence a whole system, whatever you are working on, you need to bring together representatives from all of the stakeholders involved in influencing the variable you are trying to move. Then? Bring them in at the earliest discussions and connect with them often to check your process.

You need to hear from all of these voices as equal stakeholders, balanced voices with buy-in, ownership, and responsibility for the end goals and outcomes. They are potential ambassadors for your effort and the stories of patient impact and influence when included properly are exponential.

Remember, the most valuable insights and creativity often come from outside the chorus of voices you typically encounter.

Be this group!

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Breaking the Seal

How do you do it? Here are a few tips I offer groups to work through when they are putting together the proverbial table discussion to start working on an important topic or issue:

  1. Think through the various sides of your topic
  2. Think through the voices you NEED to have buy-in from to succeed in your goal(s) as a team
  3. Include patients (caregivers and family included)
  4. Include clinicians
  5. Toss in a wild card


A few words of wisdom from someone who has worked on these gatherings for the better part of a decade:

If a population is particularly vulnerable, beef up the representation among that population so the voices included feel supported and embraced, not isolated.  Examples I often point to here are thinking through the audiences of something impacting the front desk team that’s being worked on by management at a hospital or something impacting services to elderly patients that’s being worked on because of cost impacts to the hospital. Both are important tasks to get right, but having one voice from the vulnerable population will likely breed intimidation and less participation from that voice.

Empathically consider how that person will feel entering the middle-school cafeteria of your lunch room.

What sorts of folks work for wild cards? I’ve thrown in a comedian to a grief and mortality workshop, a teacher to a clinic workshop, and some space and aviation goodness to an EHR planning workshop. Stay creative. The wild cards work best when they have a bit of a personal connection to the topic at hand – as an example, the teacher knew healthcare was frustrating to the school when it came to kids with asthma but she did not have a personal story identifying her as a patient.

Do not take a clinician from your team and say, “we are all patients” or “she’s also a caregiver to her mom,” and think you succeeded at the include patients note above. If someone is regularly on payroll at the clinic or somewhere in healthcare, even as your Chief Patient Officer, they aren’t a patient advocate for your project. If someone would feel responsible for legal reasons to perform CPR in the room if something happened, they aren’t a patient advocate.

Always make sure you are bringing in the most valuable feedback for your project – you are going to great lengths to make it happen!  You will need to finesse this collection of individuals a bit, it is not an absolute formula. If you can’t already tell, staying nimble is important!

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Beyond Healthcare

Working on something outside of healthcare? Think of it as including pilots and engineers or architects and end users. Depending on the tone of the cultural history with a particular industry, I might label these groups “academic/industry experts” and “life/use experts,” in an effort to recognize those that have expertise given they have studied and work in the industry and those that have expertise given they have lived, used, played in the industry extensively.


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Why Bother?

Time and again there are stories of huge change brought about from the in depth understanding of the “end user” in a formula. Healthcare is unique, because the “end user” of a product can also be the “inventor” in another equation.

Don’t miss the opportunity to learn and better understand the thing you are trying to solve. An academic never has all the answers, the foreman can’t always construct the thing needed, and the patient may not have the same goals for recovery that the hospital assumes.

Listen. Learn. Inspire. Do.