Wait Times Led Me To Patient Advocacy

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I’m David and I’m a Patient.

Unlike most of the other patients who have become actively engaged in efforts to improve healthcare, I don’t have a dramatic illness or medical error that activated them.  In fact, I didn’t even know I was getting involved or even that there was something to get involved in when I started.

I moved to a new geographical area and due to my rare neurological disease, I took all my care to a nearby teaching hospital.  In first several visits to a variety of different doctors for various issues, I had an average wait time of over an hour.  No one ever acted like there was anything unusual about that or apologized for the delay.  For my next few visits, whenever I was called and was asked how I was (to which I learned you were supposed to say fine even if it wasn’t true) I started adding, “it seemed like there was a very long wait today.”  The response I got uniformly from everyone was some variant of “we’re busy.”  It occurred to me that this was all about them, none of their focus was on me.

I had moved from a place where each desk in the outpatient facility had a sign on the counter saying, “ if you haven’t been seen within 15 minutes of your appointment time, please let us know.”  to a place with no communication and a response of “we’re busy”. For the last 32 years, I was always seen within 15 minutes of my scheduled appointment and now this was no longer the case, in a new facility. So, I found the email of the CEO and sent him a description of my experience, noted that this was clearly systemic and that I would be happy to talk to anyone about my concerns and to let me know if I could do anything to help improve the situation.

A couple of weeks later I got a call from a patient leader in the hospital asking me if I would like to join their patient and family advisory group.  At that point, I had never heard of patient advisors or of Patient and Family Centered Care but thought it would be interesting to see if I could contribute to some positive change.

Now, 12 years later, I have been fortunate to have become involved in the work of various different healthcare organizations from the local hospital level to major national groups.  In all that work, I’ve noticed three important things:

  1. Patients sometimes contribute to important changes – e.g. my average wait time in the last few years has been roughly zero!
  2. There are many organizations discussing and making recommendations for change without working together – and most of my experience as a patient has changed very little.
  3. The patient voice, while increasingly present is all too often drowned out by the professional’s voices.  The patient’s role in improving the experience requires clarification and amplification.

I often ask myself, what might healthcare look like if patients had an equally authoritative role with all of the others working on improvement?

We have started this blog as a venue for us (and others) to share their view of changes that we (patients) would prescribe to make all aspects of the experience better.

The time for shorter wait times in health care improvement has arrived and we hope to contribute a strong patient voice to the discussion.

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