Hospitals commonly espouse a commitment to patient-centered care (PCC). Most fail to achieve it. Causative factors are legion. PCC is often considered a strategy or a tactic, for example, when it really should be integral to an organization’s culture, and enabled by a supportive vision. Some organizations appreciate this, yet still struggle. This is understandable. Today’s health care providers were not trained to provide PCC. They lack the requisite skills, and patient empowerment unsettles them. I am not sure any of this matters, however. Traditional PCC, on life-support in many institutions, may be an outmoded concept, and not worthy of resuscitation.
The term PCC does not accurately describe what modern patients seek. Patients do not want to be at “the center” of a health care construct; they want to be recognized as full partners in their care, and are speaking about this with an increasingly unified and powerful voice. Indeed, while economics, demographics and technologic advances will continue to prompt system change, “the patient voice” is poised to become its dominant driver.
Today’s sophisticated health care consumer employs the Internet not only to acquire information, but also to speak, using blogs and other social media outlets. One Internet site tracks over 200 dialysis patient blogs, and the light these writings cast upon the treatment of chronic disease in our health care system is shocking. Such voices will not be stilled.
The voice of formal patient advocacy has now gone digital, as evidenced by the popularity of ePatient Dave and dozens of other Internet-based patient associations and advocacy sites. These are spawning patient movements with catchy mantras, such as: “Nothing about me, without me”, and “Respect me. Hear me. Work with me.” Emboldened, more and more patients are becoming health literates, speaking with stronger voices, and becoming better partners in their care. Confronted with disease, they turn to the Internet for information, and arrive at their physicians’ offices with both voice and vocabulary, seeking dialogue.
The voices of patients now echo everywhere. They talk about hospitals being dangerous places, best avoided, and how this can be accomplished. They demand transparency regarding the performance of their hospitals and providers, and speak with their feet when such information is unavailable or suggestive of poor performance.
Technology-based conveniences have changed every aspect of modern patients’ lives, who vocalize their amazement at doctors’ offices or hospitals that are not navigable, do not allow one-stop shopping or the ability to book appointments online, do not permit online access to medical records, and do not provide prompt digital copies of laboratory and diagnostic imaging results.
Patients speak with their families and peers about wanting to age and die at home, and observe that the system doesn’t let them, and that this must change. They share what they have learned about health care systems in other countries. Such communal learning further fuels expectations, which are later verbalized.
The patient voice is being heard. At one Canadian Hospital, trained Patient Advisors sit on all important hospital committees, including search and select committees. No policy decisions with patient consequences are made without patient input. The patient voice is the first one heard at hospital meetings. Hospitals are increasingly providing patients access to their medical records, and the ability to make contributions to them. Convenient “virtual wards” and other vHealth initiatives are being studied at academic centers. Patients arriving at some dialysis centers are asked: “What would you like to accomplish today?” Stanford University has developed a range of educational offerings related to patient self-management.
At present, few North American health care organizations can boast of an organizational culture that genuinely embraces the patient as a partner. This is about to change. The voice of the patient is becoming ever more powerful and will lead the health care system to a better place.
Robert Bear is a physician, consultant and author of the medical novel Sorrow’s Reward.
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