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Our newsletter is all about becoming organized, informed, equipped, and engaged to become a “participating” patient. Participatory Medicine is a groundswell movement in which the paradigm is shifted from patients being mere passengers, to becoming responsible drivers of their healthcare, and in which providers encourage and value them as full partners. http://participatorymedicine.org.
There are many of us who live with chronic or recurring illnesses. We have the responsibility to ourselves and families to keep pace and find the best health care available. This means:
- Keeping massive amounts of documents—blood work, scans, procedures, operations, and doctor’s reports.
- Keeping a schedule for these tests and procedures as well as staying on a special diet, if prescribed.
- Taking your medication on a timely and regular basis.
- Keeping up with the “information highway” to learn of the latest research, clinical trials and best practices pertaining to your disease or illness.
- Most of us belong to a listserv or support group so we can interact with others who have the same needs and issues. In this type of community, it is also a social responsibility to fellow patients to offer the benefits of our knowledge and resources.
As much as we complain that some doctors have less than optimum communication skills, it is a two-way street. We don’t always realize it, but to treat us “well” it is necessary for physicians to know who we are, i.e., our basic personality traits and life styles. I find my "care team" accepts my aggressive, can-do attitude and allow me a great deal of latitude.
Most of us have a number of professionals who treat us, including primary care physicians, secondary and tertiary care specialists, and alternative healthcare professionals. I have found that primary care physicians don’t have the time to coordinate all of the spokes on my “care wheel”, so the responsibility defaults to me, the patient. I monitor, manage, and schedule my tests, scans, and office visits. Personally, I have two types of cancer and some serious coronary artery disease. I juggle any medical issues according to priority from the front burner to the back burner.
Since the medical systems that support your doctors do fail on occasion, the patient or his/her advocate, has to be ready, and willing, to step up to the plate.
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