From the lens of a patient who has recently experienced far too many interactions with the healthcare system, I now realize how difficult it is to be participatory when you are in a place where you are not really thinking about anything but how to get through the next couple of days, free of pain, and without medications which dull the senses, and can become addictive.
I consider myself to be an empowered patient and I thrust myself into managing my health. I offer feedback to my doctors, never hesitate to speak up and ask questions, tap the wisdom and advice of my peers and encourage my clinicians work collaboratively with me to evaluate the risks/benefits of treatment plans and options. I use data including the reports and notes that are in my electronic health record and information from friends and colleagues who have had some experience with the same or similar conditions. I go the next step and search the internet for relevant information that applies to my particular health situation. I weigh and measure every issue that arises and remain steadfast in my determination to approach, head on, whatever comes up. My patient experience is that. in spite of my diligence, bad things can happen to good people.
Over the past ten years I have had two hip replacements and two hip revision surgeries, back surgery and two episodes of breast cancer. Metal poisoning from my hip protheses led to the hip revisions and the loss of 50% of the muscle in both hips leading to a hip dislocation ultimately putting me at high risk for this to happen again. Thus, my life has changed. I had always been an active individual who moved decisively and constantly, approached challenges head on, and did not need to think too much about the consequences. Suddenly I have been forced to have an awareness of every move I make.
It would be easy to get discouraged under these circumstances, but I am determined to make the most of the situation. Having a great provider team with whom I am in frequent contact, and who are in contact with one another has made it possible for me to experience good care, even in the face of such adversity.
Here are some actions that my situation has taught me, that are intended to ensure that I will experience the best outcomes.
When making a decision on surgery or a treatment for a condition you have been diagnosed with always research all of your options and be sure to ask your doctors all of the questions that you have.
Be sure you are satisfied that you have full information and that information is available at the point of care.Appoint a person to be your advocate during those times when you might not be well enough to manage and monitor your own care. It should be an individual in whom you have complete trust and with whom you can communicate as you are able.As your treatment evolves be sure you understand, and are in agreement with everything that is recommended for you.
Be sure that you understand the purpose for all medications and dosages you are given. Do not accept vague explanations regarding prescriptions, treatments and procedures.
Be fully informed about your scheduled future appointments, tests, procedures and other medical services, so that nothing falls through the cracks.
When you are released from the hospital, or a rehab facility, be sure that you leave with full information on new medications prescribed, the follow up treatment suggested, follow up appointments and home services. Double check to see that you have prescriptions for all of your medications and a viable way to get those prescriptions filled quickly.
In a few weeks, (on May 1 and 2), at the Joseph P Martin Conference Center at Harvard Medical School a group of healthcare professionals, patient advocates, practitioners, educators, thought leaders, and patients who are transforming the patient experience will gather to discuss ideas and present stories, guidelines and solutions about their interactions with the healthcare system. You might want to attend this conference. (For more information go to https://www.patientsymposium.com/
Being a participatory patient is complex because nothing is static where your health is concerned. As an empowered patient you quickly realize that it is imperative to have open channels of communication with your clinicians so that you always know the next steps. Your outcomes are going to be a matter of your choices, based on full information and collaboration with your healthcare team. Hopefully your patient experience will be positive and successful.