Day 3: Health
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The activated patient. Patient engagement. Patient centered medicine. Health citizenship. These are all terms for an ideology emerging in health care today, one that says the patient, far from being a passive consumer of physician authority and expertise, can and should be an active partner in the production of their health. It asks the physician to consider the patient’s point of view in the care and management of their health. It says that the scientific experience is not the only experience, and that the patient’s experience and perspective is just as much part of the story. It takes many forms, from the well-known advanced directive in the event of trauma to a true partnership of equals in which the provider works with the patient to determine their priorities and designs a care plan to balance the patient’s goals with clinical guidelines for the best possible health outcomes.
But why? Physicians spend years learning how to deliver effective, scientifically-sound care. What could you possibly contribute in the face of such breadth of knowledge and training? As women and as patients, it can be easy to fall into a passive role. This is especially true with specialists, who are far more likely to be male, and who we are far more likely to encounter when we have a significant concern. Far too many of us have experienced the physician who never lets us speak, poo poos our feelings, or overrides our wishes. Yet, at the same time, to be an active producer in your health care - to take that responsibility to make decisions in the face of such an overwhelming knowledge imbalance... It’s scary.
It is true, you are unlikely to ever know as much as the clinician about the science. But at the same time, they will never know as much as you about *you*. Your goal is not to learn as much as your provider about your disease; your goal is to understand how you relate to your health, and what you want for your care. This is doubly true for those of us who are mothers and daughters responsible for care for family members. There will come a time when you will need to advocate for your child or your parent. Where are the tradeoffs you’re willing to make? What are your priorities? How will your life improve if you improve your health? Take the simple (and simplistic) example of a diabetic told by her physician to reduce dietary carbohydrates. The physician would say the goal is to lower the Hemoglobin A1c level, a key indicator of diabetes severity. The patient will say “if I do this, maybe I could lose some weight and my knees won’t hurt so much.”
Ultimately, being a strong patient and advocating for your perspective means understanding much more than your health. If you want to receive patient-centered care, you have to make your physician see your complete life experience - make him or her understand your priorities and goals, and you have to know what those are. This knowledge is far scarier perhaps, than sitting in a white gown, on a cold table, and never opening your mouth, and yet it is just that that makes it so, so necessary.
Charity
Choosing a charity to represent patient centered medicine is difficult. The national non-profits most associated with it, such as NCQA and IHI rely on institutional membership fees and don’t get their funds from individual small donors. If there is a diagnosis for which you wish to advocate, diagnosis-specific patient advocacy groups can be effective advocates for the patients’ perspective on the diagnosis and its common treatments. Many safety net providers, such as free clinics and Federally Qualified Health Centers, have been enthusiastic adopters of patient engagement strategies as a way of connecting with a patient population that may have very different life experiences and resources than the providers. Medical schools frequently operate student-run free clinics that are always looking for funding and volunteers, giving you a chance to help shape the next generation of care. Ultimately, though, the most effective way to advance patient-centered medicine is to insist upon receiving it yourself. Stand up for your perspective and goals if you feel your physician isn’t. It’s hard for physicians to practice medicine from the patient’s viewpoint. It’s much easier to spout the science than it is to take the time to understand and reframe it into the patient’s terms. The more patients that demand it, the more the provider will be reminded, until they have no hope of forgetting.
The activated patient. Patient engagement. Patient centered medicine. Health citizenship. These are all terms for an ideology emerging in health care today, one that says the patient, far from being a passive consumer of physician authority and expertise, can and should be an active partner in the production of their health. It asks the physician to consider the patient’s point of view in the care and management of their health. It says that the scientific experience is not the only experience, and that the patient’s experience and perspective is just as much part of the story. It takes many forms, from the well-known advanced directive in the event of trauma to a true partnership of equals in which the provider works with the patient to determine their priorities and designs a care plan to balance the patient’s goals with clinical guidelines for the best possible health outcomes.
But why? Physicians spend years learning how to deliver effective, scientifically-sound care. What could you possibly contribute in the face of such breadth of knowledge and training? As women and as patients, it can be easy to fall into a passive role. This is especially true with specialists, who are far more likely to be male, and who we are far more likely to encounter when we have a significant concern. Far too many of us have experienced the physician who never lets us speak, poo poos our feelings, or overrides our wishes. Yet, at the same time, to be an active producer in your health care - to take that responsibility to make decisions in the face of such an overwhelming knowledge imbalance... It’s scary.
It is true, you are unlikely to ever know as much as the clinician about the science. But at the same time, they will never know as much as you about *you*. Your goal is not to learn as much as your provider about your disease; your goal is to understand how you relate to your health, and what you want for your care. This is doubly true for those of us who are mothers and daughters responsible for care for family members. There will come a time when you will need to advocate for your child or your parent. Where are the tradeoffs you’re willing to make? What are your priorities? How will your life improve if you improve your health? Take the simple (and simplistic) example of a diabetic told by her physician to reduce dietary carbohydrates. The physician would say the goal is to lower the Hemoglobin A1c level, a key indicator of diabetes severity. The patient will say “if I do this, maybe I could lose some weight and my knees won’t hurt so much.”
Ultimately, being a strong patient and advocating for your perspective means understanding much more than your health. If you want to receive patient-centered care, you have to make your physician see your complete life experience - make him or her understand your priorities and goals, and you have to know what those are. This knowledge is far scarier perhaps, than sitting in a white gown, on a cold table, and never opening your mouth, and yet it is just that that makes it so, so necessary.
Charity
Choosing a charity to represent patient centered medicine is difficult. The national non-profits most associated with it, such as NCQA and IHI rely on institutional membership fees and don’t get their funds from individual small donors. If there is a diagnosis for which you wish to advocate, diagnosis-specific patient advocacy groups can be effective advocates for the patients’ perspective on the diagnosis and its common treatments. Many safety net providers, such as free clinics and Federally Qualified Health Centers, have been enthusiastic adopters of patient engagement strategies as a way of connecting with a patient population that may have very different life experiences and resources than the providers. Medical schools frequently operate student-run free clinics that are always looking for funding and volunteers, giving you a chance to help shape the next generation of care. Ultimately, though, the most effective way to advance patient-centered medicine is to insist upon receiving it yourself. Stand up for your perspective and goals if you feel your physician isn’t. It’s hard for physicians to practice medicine from the patient’s viewpoint. It’s much easier to spout the science than it is to take the time to understand and reframe it into the patient’s terms. The more patients that demand it, the more the provider will be reminded, until they have no hope of forgetting.