What makes an empowered patient? two things; A desire to have more information in order to make the right decision and the desire to be involved with all decision making. Now doesn’t that sound simple?
In my work, I have the privilege to meet many people who are empowered patients and caregivers and don’t realize it. The other day, I was meeting with a mother of who, for the last 2 years, had been trying to get a daignosis for her daughter . She had taken her to many doctors and centers. She was literate on medical terminology, how the system worked and how to evaluate whether a medical provider was actually considering her as part of the team. I had an enlightening conversation on how she had learned to ask questions, be persistent on an issue and not back down when people didn’t respond. She was by all definitions an empowered patient and caregiver. She was also her daughter’s best advocate.
Her main question to me was, what do I do when people blow me off, as if I am the emotional mother even when I am trying to just get some information? Why do medical people feel this is a threat? As an aside, these woman had a very gentle and soft voice and was probably five feet tall. Her question was one I have been asked numerous times. I am often at a loss as to why medical professionals don’t accept patient input or thoughtful questions. Many people have learned never to say where their information came from. It seems the minute the Internet is mentioned , a person gets labeled as someone who has self diagnosed.
One of the reasons people look to the Internet is because they are not provided the information they request. People need to be able to make informed decisions even if the decision is different than the doctor. Many times, doctors won’t offer possible options, an appropriate referral or a specific diagnostic test. It is frustrating for patient and their families when in the end, one of these options may be the only way to go.
People are looking for a partnership in their healthcare especially when no immediate answers are available. They are looking for reasonable communication and response times. When providers don’t return calls or take days to respond, it does not create any sense of partnership. It creates a lack of trust. Patients then have to look for answers anywhere they can be found. Sometimes that means a second or third opinion, or on the Internet.
I think it can be hard for medical professionals to accept that a non medical person can have a grasp on medical information. It is possible for people to have an understanding of disease process and treatment options by thorough research and questioning. It is time for the medical community to support this endeavor by patients and assist in enhancing their knowledge. If a patient doesn’t have all the information or some is incorrect, then provide resources that provide the right information.
After talking to this wonderful woman, I told her she was an amazing empowered patient and caregiver. She looked at me and said what was that? I think my mouth dropped. I explained what the empowered patient movement was all about. I realized that people are working hard to get the right medical care and get through the system undamaged learning as they go. This is the essence of being an empowered patient. I was able to tell her she was an exceptional example of an empowered patient. She got teary eyed and said, I though I was the only one. It made a difference to her to learn there was a community of people going through what she has.