The Patient Experience is the Human Experience

The Patient Prescription is a blog where patients can give their perspective, share their insights and recommend changes in healthcare.  We believe the patient voice is critical to improving the experience. So, when David and I were asked to participate in the Beryl Institute’s Patient Experience Conference in Denver last week, we were honored and excited to participate.

With over 1,000 participants from around the globe, the conference included caregivers and nurses, physicians and support staff, patients and families, resource providers and many others who are concerned about the patient experience.

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We were asked to speak on a panel with two other patients about our personal experience and tell our health care stories. This was a wonderful opportunity to impact the conversation around improving the patient experience.

Click on the link below to view the two videos telling our stories.

Patient and Caregiver Video

Patient Stories Video

We wanted to share some highlights from our discussion.

Healthcare has changed dramatically over time. Today we have more choices about the care we receive. Developing a personal connection with your health care team is critical and if you don’t feel that connection you can find someone who you do connect with. Patients are becoming more empowered to advocate for themselves and expect better treatment.

trustcareA key theme on the panel was compassionate caregiving; doctors, nurses and other staff going above and beyond when treating the patient. The stories described physicians truly understanding and respecting the wishes, fears, and anxieties of the patients throughout their healthcare experience.

Patients want to be treated like people (not cases) with different goals and needs.  Importantly, family members are part of the equation and caregivers are often overlooked and not given the respect and support they deserve.

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What patients want and what healthcare staff thinks they want are often not one and the same. Often communication is an area where things break down.  Good communication is critical for a positive experience.

Each patient’s experience is different.

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To a patient, a healthcare experience can be life changing. I remember becoming so close to my oncology nurse and I think she was surprised by how much she would always be a part of my life, even decades after she had treated me.

Patient experience isn’t new (everyone has been a patient at some point in their life throughout time) but what is new is the idea that patients can partner with physicians, nurses and staff to help improve care and outcomes. The key is engaging patients to share their experiences, thoughts, and ideas by collaborating with staff who listen and understand and doesn’t make assumptions about what patients want and need.

The Beryl Institute’s Patient Experience Conference engaged 1,000 plus participants in this dialogue, created amazing energy and commitment around the discussion of integrating patient voices into the process of improving healthcare. Patient Engagement is important because research has shown, that patient engagement improves healthcare outcomes, quality, and satisfaction. It is clear that all voices matter as the healthcare experience is the human experience for patients, caregivers and staff delivering care.

 

Shari Berman and David Andrews are co-authors of the Patient Prescription Blog.

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If I Were a Dog My Healthcare Experience Might Be Better

Here is a tale, a tale of two knees.


A Tale of my own knee

Once upon a time, I had some pain in my knee that would not go away. After attempts to rehabilitate it with exercise and then patiently let it recover, I decided to see an orthopedic surgeon. He suggested a cortisone shot and if that didn’t work he could do arthroscopic surgery to repair a presumed torn ligament. The cortisone worked fairly well for a while, but I decided after some time to pursue the surgery. After an MRI, the outpatient surgery was scheduled and successfully performed. A follow-up course of physical therapy was scheduled and completed. At a subsequent appointment with the surgeon, he determined that all was well and the surgery had been a success.

During the whole procedure, all the people were quite nice and helpful. Everything occurred roughly as it was scheduled with no undue delays. In my experience with healthcare, this was one of the more positive experiences I have had, though fairly robotic and impersonal.

When all the bills were received (including charges from many individuals whose names I didn’t recognize and procedures of which I wasn’t sure) the total (prior to any contractual discounts) was something over $20,000. Each part of the procedure and all the prior and follow-up appointments and evaluations were billed individually. Medicare and my supplemental insurance paid essentially everything (after discounts) and all was well. It is important to note that the actually amount paid to the providers for my knee surgery was considerably less than the original billed amount because of contractual discounts – in my case between providers and Medicare.

A Tale of my dog’s knee

About a month after my knee surgery, my dog developed, of all things, a knee problem. Our local veterinarian recommended taking the dog to a veterinary orthopedic specialist for the necessary surgery.

From the moment we walked in the door of the facility our experience was like no other we have ever had. We were warmly welcomed and offered coffee. The facility was new, modern, very clean and efficient. We were seen right away and the veterinarian demonstrated and explained our dog’s problem in detail, what he would do and what the aftercare and recovery would entail. At the front desk, we were asked if we would like a to sign up for a special pet care credit card which would allow us to pay for this surgery interest-free over a year – the woman who made the suggestion coached us through the completion of the application. They also gave us information about pet insurance, but no pressure to sign up. The entire staff was extremely friendly and considerate. The dog was left for the surgery and would stay overnight to recover before coming home.

After the surgery, we received a call that all had gone well. The next morning we received another call that our dog was doing well and ready to go home. When we arrived to pick up our dog we were once again greeted enthusiastically and offered coffee. We went to an examination room where a “nurse” explained for roughly a half hour what had been done and the details of the aftercare for which we would be responsible. She repeatedly said that we should call if there were any questions or concerns. We were provided with instructions and diagrams that clearly explained everything that had been done and we what we would need to do. Next, the doctor came into the room with our dog and he discussed the procedure and talked about how much he loved our dog. Next, a veterinary rehabilitation specialist, who reviewed the physical therapy plan entered the room and taught us how to do the therapy exercises with our dog. She watched us perform the tasks to ensure we were doing things correctly. The therapist was extremely helpful and very gentle but clear in coaching my wife in the details of the physical therapy. She also implored us to call if there were any questions or concerns. She left us with printed materials that explained everything – complete with clear pictures.

Before we left the office, a follow-up appointment was scheduled and the next morning we received a call checking on how our dog was doing. From beginning to end every touch point and interaction was excellent.

You may be wondering how we were billed for all this attention. The invoice arrived, in the name of the doctor who performed the surgery only, and included every service performed for a total of $1800.

While my knee surgery experience was very good, our experience with the dog was phenomenal. Upon reflection, my wife suggested that if I had any further knee problems I should get down on all four and woof – she would take me to those vets for my surgery.

Here is a bone to chew on (pun intended). Why can’t the human healthcare experience be more like my dog’s? Why are their differentials in price and in quality and delivery of services? What do you think?

The puzzle remains – the next time I have a knee problem should I get down on my hands and knees, woof and go to the vet? Why or why not?

David Andrews is co-author of The Patients Prescription

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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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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