Desperately Seeking Patient/Family Opinions!

They're talking about us. The talking never stops, really. The amount of thought, energy and resources that go into exploring and implementing new ideas for improving patient care is truly astounding.

In recent years, patient safety strategies have been at the top of the list for issues to discuss and address. Since the study showing that 44,000 to 98,000 people die each year due to medication error surfaced, there have been very compelling reasons to make safety a huge priority.

In the recent years, I've begun to chime in about this issue of safety myself. It's become a minor obsession, really. Last week I was at a conference in Washington DC where I was surrounded by healthcare professionals of every kind and from all over the globe. For a geek like me, this is always an exciting opportunity to learn more about what is going on with these efforts to improve quality care.

The conference opened with a panel of experts delivering both encouraging and disappointing news. The encouragement generally boils down to the fact that the dedication and passion for patient safety solutions continues to spread so more and more healthcare professionals are making this issue a cornerstone of their research and practice.

The less-encouraging news came in the form of two studies; one from Medicare/Medicaid and one from my home state of North Carolina. Both studies showed that, despite massive efforts, little improvement can be seen in the arena of patient safety. How frustrating and surprising to those who have been working so hard to make hospitals and clinics safer places!

It was that moment that it dawned on me:

How much improvement can we really expect to make if only half of the equation is engaged in the solutions?

If the only people charged with decreasing error are the healthcare professionals, the patient and family are a missed resource, right? I can check the meds inside the little white cup handed to me by my nurse in the hospital, can't I? If someone comes to wheel me out of the room, my family member can make sure they've come to get the correct patient can't they?

I could go on and on here. I fact, I've written a whole book and have an entire workshop dedicated to "Partnering with Patients and Families for Safety". I won't bore you with more ideas or suggestions but trust me, there are many, many ways we can work with our healthcare professionals as our own "patient safety officers."

So assuming you believe me, let me ask the burning question: do you (patients and families) WANT to partner?

I spend a fair amount of my time as a speaker encouraging healthcare professionals to involve us in our care. It's my experience as a patient, and my understanding from other patients and families, that we want to be a part of our healthcare team by being involved in decision making, have tools and permission to speak up if we are worried or if things have gone awry, and being respected as an individual with illness, not as an illness attached to an individual.

I've taken for granted that this directly translates to the concept that patients and families want to be a partner in the healthcare experience. It dawned on me, however, that maybe it's my own special brand of geek-ness that has made me enthusiastic about being a partner in my care. Maybe most people would find this too difficult, exhausting, or outside their "job description" as a patient/family member. Maybe most people would rather not be a part of the care team and leave that to the folks with the scrubs and lab coats!

In broad terms, being a partner in our care means being given the education to understand the healthcare circumstances, the tools to speak up when there is a question or concern and the empowerment to be partly responsible for safety issues within the patient/family realm of control and understanding*. (Forgive this long sentence!)

*Defining "within the realm of control and understanding". As a patient, I could not be expected to look out for errors while I am in surgery, of course. I'm not even awake! Likewise, I could not be expected to monitor my mother's lab results if I didn't know what I was looking at.

So, I come back to the question. If you had the following three things, would you WANT to be a partner in your care?

1. The education to understand the medical circumstances at hand

2. The tools to speak up if there was a concern or question

(As an example, I was recently at a hospital in Tacoma, WA. They asked their patients to use the "Time Out" hand signal if they needed clarification or wanted to correct something being said during morning rounds.)

3. Empowerment from the healthcare professionals that your input was both welcome and needed

There is so much focus on "shifting the healthcare culture" right now. This phrase is heard over and over in most meetings and in every conference where healthcare professionals are talking about improving patient care. Once again, however, the shift in the culture is referring to healthcare professionals changing their attitudes or moving away from old-fashioned ways of taking care of patients.

What about us? Shouldn't we be also shifting the patient healthcare culture? If we stay the same and they change, where will that get us? Is it time for us to let go of some old-fashioned ideals of what it means to be in the hospital or in clinic?

I ask because I'm curious. I ask because I've been assuming I know the answer. I ask because the train might move more quickly if we were on board. I ask because I've begun to build a case for patients and families being trained and held accountable as a partner in the healthcare team, and I never stopped to ask if most would want that. If they don't, I might need to pipe down and stop asking professionals to find ways to partner with us.

Please help me. Be my blogging focus group and let me know your thoughts. The next steps in my career may just depend on your answers! Thanks in advance for your feedback!

Here are the questions I'd like you to ponder and answer:

1. Do you WANT to be a partner in healthcare (for you or loved ones) or would you prefer to no be directly involved in patient care, plan of care, safety measures etc?

2. If you DO want to partner, what do you need to do so? For example, do you feel like you have enough information to do so? Permission? Guts?

3. What do you see as the greatest challenge to partnership?

4. How might you as a patient/family member become a part of the healthcare team today, regardless of your current clinic/hospital and healthcare team? Can you? Please be specific.