Monday, December 12, 2016

Our SAG (Stakeholder Advisory Group)

“The best thing for being sad," replied Merlin, beginning to puff and blow, "is to learn something. That's the only thing that never fails. You may grow old and trembling in your anatomies, you may lie awake at night listening to the disorder of your veins, you may miss your only love, you may see the world about you devastated by evil lunatics, or know your honour trampled in the sewers of baser minds. There is only one thing for it then — to learn. Learn why the world wags and what wags it. That is the only thing which the mind can never exhaust, never alienate, never be tortured by, never fear or distrust, and never dream of regretting. Learning is the only thing for you. Look what a lot of things there are to learn.”
Learning is never so sweet as when that education comes from people who care.   I want to tell you just how important our SAG (Stakeholder Advisory Group)  is to our PCORI IBH-PC learning community. Our advisory group is made up of 22 members who represent the “end users” of healthcare,namely, patients, family caregivers, community leaders, providers, payers and policy makers.  For some reason when I was thinking about each member and who/what they represent I got an image of one of those mix and match puzzles that children play with where you can switch heads and feet and torsos around.  It dawned on me the more I listen to our advisers the more I hear that the common thread in our SAG puzzle is the compassion for patients.  Even though each person represents a different community within our healthcare system, everyone on the SAG seems bonded by the magnitude of caring for others.   All patients want a system that can serve effectively and efficiently but primarily we want a system that can invite all human beings to thrive (not just survive) within the boundaries of each of our unique health conditions.

By the way, that definition of good health actually comes from members of our SAG.
So how does the SAG work?

Long before the project got funded, members of the SAG, experts and leaders in their communities, were meeting, emailing and conversing with the research team in order to help design the study and write the grant proposal. Now that funding has happened, they will continue to help us keep things rigorous and meaningful as the study is conducted. Eventually when the project ends, they will also help disseminate the findings of the study to their communities.  

  Our SAG will be meeting at least 4 times a year over the life of the project. (*and possibly a few “extra miles” if needed!) Meetings are held at UVM for those who can attend in person but members are also able to attend via webinar. During these 2 hour sessions the research team is there to provide information about current activities going as planned but also share news about what we are learning or thinking hard about. The real heart of these meetings is the moment when we ask our members to help us figure something out that might be missing from that knowledge base.
So what has the SAG been up to lately you may ask?
Recently, the Education team asked the patient co-investigators for some help. They wanted a comprehensive “checklist” of what is essential for patient-centered integration. The Ed team is constructing the body of knowledge that will be used to educate the sites who get randomized into the active arm of the study. At least 80 topics are being covered and currently are under development. This list would help assure that all topics are seen through a lens of what is most important to patients.

Defining what patient-centered means is no easy task. We all want so much from our healthcare system. We all need so much depending on where we find ourselves as the “end user”.  But thank you for asking Ed team!!  So glad you did. And who better to ask than patients?  
The 3 Patient Co-investigators on the research team have been working on this list for many months. Through hours of really deep, honest conversations and documenting our experiences that involved getting really good care or experiences when we had to resort to finding our own resources, we have been getting to the heart of what it means to actually live well with a chronic illness.  By now we could write a book on what matters most. But we know we can’t answer that question for everyone. There are no two patients alike. We needed confirmation and help to determine what we were possibly missing and we needed to transform all of that “data” into checklist form.  
So we reached out to the SAG and asked for an “extra mile”.  We invited members to attend two focus group sessions and give us the patient perspective. Not surprisingly, despite very short notice, we had several members step up and offer to help.
During these sessions, using a very effective method called an Affinity diagram and expertly lead by Connie van Eeghen, Project Director, our advisers were able to generate a lot of content in a short amount of time. We asked these questions: What matters most to Patients? and What do Patients want the Learners (your integrated care team) to remember?  This tenacious and courageous group, with much insight and thoughtful consideration, gave us a comprehensive list. During our 2nd session our advisers took it another step further and applied this checklist to a matrix of patient concerns that will be important topics covered in the educational materials.
1st session-affinity diagram-What matters most to patients?

2nd session-creating the matrix
When our 3rd quarterly meeting convened on Dec 5th, we asked our SAG members to take it one step further. I felt we might be"testing the Camel’s back",but I also know just how important it is to get it right for patients, so we asked for actual lived examples of what successful experiences look and sound like. The question we asked: "During healthcare interactions, what was actually said that worked well? What was actually done that made it successful for the patient? " And once again, our members stepped up to the plate and delivered what was needed.

We have all heard that expression: “Give a man a fish, he eats for a day. Teach a man to fish, he eats for a lifetime.”  I get it, very nice idea- but in the interest of deeper learning, I would take it a few steps backwards...Who wants him to eat fish everyday for a lifetime and why?   It makes sense to me to ask the person who needs food what he really wants to eat before you start giving him, or teaching him anything.

 So as all of you caring and compassionate learners out there go about doing the tough work of transforming healthcare, if you find yourself wondering if what you are doing will work best for patients, I invite you to give me a call. I just might be able to get you on the short list to ask our Stakeholders to help answer your questions.   Jen Lavoie