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We need you…to do work for free. 

Everyone wants to be needed, and it is true, volunteers make incredible amounts of work possible for populations in need and communities worldwide every day.

When you are designing a new bridge in town, do you ask the architect to build one for free? Nope. Your work is just as important as that bridge, don’t devalue the currency of your efforts!

Would you show up to your work if they weren’t paying you? Nope. Would you take off of work without pay to help volunteer with your local post office? Nope. So, how would you feel about being asked to spend 10-50 hours over several months helping a major employer in town with a project to enhance their products and services…for free? Exactly.

When you are asking for someone to participate in a project, especially something that significantly improves your service delivery or shapes a new project, you aren’t looking for a volunteer to perform a generic task – you are looking for a subject matter expert. When you bring a patient on a project, you are asking them to share their expertise from having day-to-day observations of a particular disease state, their own.


Just compensation. 

A few tips for finding viability on the path to just compensation for your project team:

  1. When establishing the project budget, prioritize compensation to all partners, recognizing external partners at the same time you create the financial impact report for the internal staff involved in the project.
  2. Recognize the years of expertise of the patient in the subject of their health and compensate the patient accordingly for that expertise, equal to that of their clinician colleagues on the project. You value that expertise in both audiences, a minimum-wage employee is not there as a minimum-wage patient.
  3. Share compensation information transparently.
  4. Compensation does not always have to mean cash. Be creative!

Recognize promises of “exposure” no longer have currency in the contemporary market. Everyone has exposure with social media. To put this another way, your project has a greater value than a single tweet or blog post. Push beyond this pitch and find something more meaningful to the individual.

Remember how it felt when you friends asked you to help them move and promised beer and pizza in exchange for 5 hours of hard labor? Yeah, not great. We can all agree, pizza nights should stay with your dorm room in college and couple/family fun nights. Again, framing this another way, your project intends to have greater impact and value than a slice of pizza and a beer, right?

This project is being worked on by your organization to create lasting impact and change. It will likely improve your processes, lower turnover and burnout rates, and create a positive impact on your revenues. Define and recognize the project’s value across all of your engagements.


Think quirky.

I talk a lot about the need to meet people where they are when working with groups.

I often use the metaphor of picturing a home with a set of cocktail parties in full swing. You arrive and see folks are gathered in the kitchen, maybe by the fireplace in the living room and another cluster is out on the back deck. You know folks in all three locations. Perhaps you hop between them to say hello and then you engage with a colleague who needs to meet your friend in the other room. You don’t shout until they show up in your room, the two of you walk over to say hello in their room.

When setting out to look for creative solutions, I always tell folks to dream big and think quirky. 

What has value to the person you hope to engage with on this project? How might you support their business development and work? How might you elevate them in their industry? Perhaps cutting a paycheck isn’t possible but offering funding for travel and presentation of the project at an industry meeting is a possibility. Perhaps paying $1000 for the 10-15 hours of work they will do for the project creates some accounting headaches, but you could easily offer $2000 in local advertising through your contact at the local paper or underwrite a sponsorship at your annual gala. Providing an editorial team to support a formal publication of the findings and giving the person authorship or co-authorship on a future journal article has currency for an academic-linked individual.

Be gracious and considerate when engaging with folks to work with you on a project, transparency about the terms and capacity for compensation will avoid hurt feelings later and encourage collaboration from the start.

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!

~ ~ ~

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!

~ ~ ~

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.


~ ~ ~

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.

I attended a walking tour once where the guide was going on about Von Gogh’s quest to paint yellow in the most yellowy of yellow ways. Even NIH articles talk about it. Theories abound.

As we walked, I gained an appreciation for the lengths this guy went to on his quest for a single portrait of yellowy yellowness. I remember the guide saying something like:

“Van Gogh sought his whole career to paint in a way that demonstrated how yellow made him feel.”

The tour was years ago but that line stuck with me. Has anything ever trapped you like that? Like a quest to craft a brushstroke for how something made you feel?

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