Expanding Engagement and Capabilities of People at the Center

By September 14, 2014September 16th, 2018Advocate, Caregiver, Clinician, Consumer, ePatient
Patient Centered Care for Presentation

Some people want someone else to be the leader in their health care journey. Others take offense if anyone even hints at taking that lead – with every stripe of variation in between. Same goes for using technology – some seek technology and use it, for others it’s not even in their universe of thought, some depend on team members to manage their technology.  Think [hearing] aides, apps, spreadsheets. For those who are health professionals or family caregivers how do we know where an individual lies on the continuum of engagement and capabilities and what do we do with what we learn with those persons whose team we are on? 

Health Affairs published a framework for engagement in February 2013. The levels of engagement are Consultation, Involvement, Partnership and Shared Leadership.  Seems like both ends of the continuum are left off: Apparently NOT involved on one end and Sole Leadership on the other.  Both ends are tough.  I say apparently not involved because no one could have asked, cognitive and language disconnects could be present, or there’s complete inability or wish to take part. Sole leadership by individuals is still largely outside the experience and frame of much of the health industrial complex. Completely taking charge either with or without professional consultation can be pretty foreign to many team members.
Using technology is similar. My grandson learned to use an iPad in 45 minutes when 2 years old.  My 87 year old mother is just now texting after having a cell phone for 5 years (she only turned it on when she wanted to make a call). Ma, I know you’re reading this 🙂
As I explore the possibilities and variation of the worlds of people at the center of care, I want a quick and simple assessment scale that professional and lay team members can use to gauge where the individual lies on the engagement continuum and once known, how can the team member best be helpful to that person – helpful maximizing health or helpful with movement along the continuum to increase control, increase decision-making, and increase tech capabilities?  Do any of my dear readers have experience with this? What helps us learn about engagement and capabilities and what helps us do something with what we learn?  Maybe one of you already have this down. If you do, does it help?


  • Danny van Leeuwen says:

    Kathy, Thanks for your thoughts. Yes, power dynamics out of balance. It’s everywhere, it’s everywhere.

  • Kathy says:

    I agree with you that people are all over the place on the continuum. As a disabled Registered Nurse and as a chronic illness patient, many people are ignorant of how to navigate the healthcare system because it is so complex. Especially, if they have not been seriously ill themselves or had a family member who was. Some providers in specialties have health care advocates to assist people, and their families through the system. This is especially true for cancer care. But most diseases don’t have this assistance. People have to figure out how to communicate with their doctor and their staff, how to treat their conditions, and how to navigate if hospitalized. Much of the language is incomprehensible if you don’t have a medical background. Add in insurance companies and many people are overwhelmed.

    In many hospitals Shared Leadership doesn’t really happen. Many nurses feel left out of policy making. Upper management tells them what to do and doctors tell them what to do. Now insurance companies are telling doctors and hospitals what to do. Patients end up at the bottom of the ladder. Nurses try to advocate for what’s best for their patients, but the system isn’t all that flexible. So after bashing their heads against inflexible walls, many get burned out. They either leave nursing or do exactly as their told and no more.
    All this to say, how can we have engagement when all the parties don’t have the same power in the relationship?

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