Editor’s Note: Our recent articles have given a high-level overview of the responses to some questions that the Society for Participatory Medicine (SPM) suggested for the Beryl Institute – IPSOS PX Pulse: Consumer Perspectives on Patient Experience in the US (PX Pulse).  This installment takes a deeper dive into one part of the data and one person’s experience taking the actions to collaborate with their providers.  We thank Vickie Wilkerson for sharing her story that models how collaborative patients can positively affect their healthcare.

What the data say

In the PX Pulse, nearly 80% of respondents believe that they should have equal or greater control over their healthcare decisions as their doctors.  Roughly half of all respondents reported that they almost always come prepared to their visits (54%), speak honestly (53%), ask questions (52%), and share concerns (49%).  Consistent with this, 51% of respondents almost always considered themselves an active member of the care team.

Digging a little deeper, the results also show that those who prefer equal or greater control were also more likely to take collaborative action. Among those who preferred equal control, 58% reported they almost always spoke honestly to their care team, even when it was difficult to do so. And 60% of those who preferred a greater share of the control did so.  Just 42% of respondents who prefer that doctors have more control reported speaking honestly almost always.    The results for arriving prepared, asking questions, and sharing concerns were similar.

Only 34% of respondents who deferred more control to their doctors considered themselves an active part of the care team, compared to 53% for those who prefer shared control and 58% of those who prefer more control.

Vickie’s Story

Living with an auto-immune disease can bring many challenges. Most of those conditions can lead to having other conditions. These are called comorbidities. For instance, in my case, I have psoriasis. I have had it nearly 20 years now. Sometimes I feel like I live in a doctor’s office because of all the health conditions that I live with. On top of having psoriasis I now have high blood pressure, high cholesterol, anxiety, and psoriatic arthritis. This means I see a primary care doctor, a rheumatologist, and a dermatologist routinely. Some people are lucky that if they see multiple doctors those doctors will communicate with each other concerning treatment so that the patient is getting the best care. In my case, none of my doctors communicate with each other.

I have to speak for others

Because my doctors do not communicate with each other this means I have to speak up about the care I receive from others. It also means I must be vocal in my own health care. For the longest time I didn’t do that. From the minute of your diagnosis, it is not something you are taught to do – speak up. I wish I had.  I believe my health has suffered because I didn’t speak up. My doctor would say whatever during the visit and that would be it. I didn’t tell him/her what the other doctors said, nor did I say what I felt was right or wrong. Well, I can tell you that that is not me anymore. I am very vocal when it comes to my health care.

Learning to speak up

We have so much information now when it comes to dealing with our health. Computers are handy for looking into whatever it is you are dealing with. However, 20 years ago, there was not a lot of information about psoriasis. It wasn’t until I got involved in advocacy that I learned that I could have a say in my health care. When I started my advocacy journey, I was shy and timid. It didn’t take long before I found my voice. I learned if you have a doctor that doesn’t listen or doesn’t think what you are saying means anything then it is time to find a new doctor. It is because of this reason I have had multiple doctors over the years.

Finding the right doctors

It is your health. No one knows your body and what you are dealing with better than you. That means you have an obligation to yourself to take control of your health care. You will find some doctors that do not like it when you start speaking up about your treatment. On the other hand, you will find doctors that now believe that if you speak up, the two of you can begin to find options that work best for your care. Those are the doctors you want to have in your corner. Someone who will listen to you, your concerns and not dismiss what you are saying.

Better health care

My doctor’s visits now are so much better. I feel like I am in control of my health. No matter which doctors I am seeing we discuss what the other doctors say along with how we are going to proceed in my treatment. That way I am getting the best care possible. You must be your own advocate when it comes to your health. Speak up when you feel something is not to your liking. If it is to your liking speak up about that too. Remember it is your health. You have the right to speak up about what you feel is the right direction in your own health treatment.