What Do Patients Really Want? Change!

My name is Shari and I am a patient.

Chances are you, the reader, have had some experience as a patient or as a family member of a patient. If not, maybe you are a healthcare worker or a physician who has never seen the other side. This blog is for everyone.

Patients have their stories. The good, the bad, and the ugly.

We may complain about wait times or difficulties scheduling appointments or dealing with insurance plans and high costs of medical care but for the most part we put up with the difficulties we may face and move on until the next event that gives us reason to complain. Often the things we care about are different from what healthcare staff might think.

I have been through a lot. Sometimes I feel like a walking medical experiment. I have had cancer twice, and lost my mother to cancer. The older I get, the more friends and acquaintances I have that have medical stories that add to the mix. Over the years I have had hundreds of appointments, blood tests, scans and procedures.

When I left my career in financial services to raise my children, I knew I needed to find a way to use my professional experience and health experience to do something to give back. I did some work volunteering for various cancer organizations but it wasn’t until my mother was diagnosed with cancer and passed away that I became passionate about taking my experience as well as hers’ and working to improve the patient experience.

There were so many ways my mother’s experience could have been better if doctors had actually talked to her, listened to her and understood what was most important to her. She didn’t see things the way I did as her generation was taught, “the doctor knows best” and not to question or explore alternatives. But the truth is we should question and shouldn’t feel guilty about asking the questions and seeking out alternative solutions. After my mother’s death, I was pretty fired up and began to explore ways I could lend my voice and make a difference.

The reality is the medical environment is extremely complicated and tough for the average person to navigate. Many people will often ask me for advice because they are so overwhelmed. Medical staff also feels frustrated because of regulations and pressures that make it difficult for them to improve the patient experience.

I decided to formalize my advice giving, by volunteering my time and lending my personal perspective to various institutions that also are concerned about improving the patient experience. What I have learned is just as the medical environment is tough to navigate, so is the world of organizations trying to improve the patient experience. There are a lot of them and many seem to have the same goals and are not necessarily working collaboratively. There appears to be many separate silos.

Today, many hospitals and health organizations have started to include patients in the conversation around patient care. That is the good news.

The not so good news is just asking a patient (sometimes the same patient over and over) to sit on a committee or attend a meeting is not enough. Sometimes we speak, sometimes we listen and often our presence is a “check off the box” (a patient has been included in the meeting) rather than something truly impactful and leading to significant change.

And I wonder if patients (not involved in this work) really feel that the patient experience is changing for the better?

In my work, I have met many dedicated people who have become engaged in the patient experience discussion because of their own stories. Many of us would say we are at a point where we have to come to realize that we appreciate being invited to the meeting and lending our voice but we often leave the meeting feeling helpless and unable to move things forward and actually making change. We often wonder if people are really listening to us?

Bottom line is we want to make change and not just talk about it, with no action.

This blog gives us an opportunity to take a little bit more control and share what we have learned but more importantly prescribe change, from the patients’ point of view that is desperately needed.

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