Jane, who is 53 and lives in a rural community, is diagnosed with breast cancer spotted on her annual mammogram. Her primary care physician (PCP) refers her to a cancer center two hours away from her home for further screening. The doctors there decide that Jane needs surgery, followed by chemotherapy which will be done at the cancer center. Prior to visiting the cancer center, Jane is instructed to collect all of her medical records, including those held by her primary care physician, gynecologist, and the x-ray films that are filed at her local hospital. With the assistance of her PCP, Jane creates a personal health record that includes her family history of breast cancer, her own medical history and other scanned images. She shares the PHR with all of her doctors at the cancer center who also provide her with the surgery and pathology reports and specifics on her treatment. Thus, both her local doctors and the physicians from the cancer center are able to follow her progress and have all of the informtion on her treatment.
Patients are increasingly seen by a wide array of providers in a number of different locations, often raising concerns about fragmentation of care. When patients are most ill and need to be hospitalized, they are seen, not by their PCP who knows them well and who they trust, but by hospitalists and specialists who they have often never met. The way the system is now structured, the level of acuity of hospitalized patients has gone up drastically because insurance companies are increasingly refusing to pay for patients with lesser illnesses to be treated in the hospital. The hospitalist, who has day by day experience with in-patient care becomes the lead doctor.
According to the American Academy of Family Physicians, it is an obligation of physicians to provide continuity of care to their patients in all settings, both directly and by coordination of care with other health care professionals. Continuity implies a sense of affiliation between patients and their practitioners and the passing off of all necessary information..
When we think of continuity of care, we think of insuring that information is available at the point of care. But continuity of care is more. There are three facets: information continuity, management continuity and relational continuity in a care environment where patients and physicians collaboratlvely work together to deliver effective health care. This care must be coherent, connected and consistent. Information continuity means that all of the patient’s medical history, conditions, treatments and related data are available at the point of care. Management continuity means that there is a consistent approach to treatment. This is particularly important in chronic or complex diseases that require management from several providers who could potentially work at cross purposes. Plans and care protocols must be shared and agreed upon and ideally one gatekeeper (usually the PCP) oversees the patient and keeps all of the pieces in order. Relational continuity refers to a sustainable therapeutic relationship between patients and one or more providers and insures that bridges between past, current and future providers are in place.
The situation where a patient who is hospitalized does not regularly see his or her PCP but is overseen by a hospitalist who the patient has not personally met, is just one example of how continuity of care is threatened and interrupted. Another example results from physician groups who rotate daily hospital rounding so the patient sees a different doctor every day. This makes patient care difficult since the doctor does not have the benefit of seeing what the patient looked like the day before and therefore does not have an essential benchmark to determine whether the patient is better, worse or unchanged.
Continuity of Care records, (CCR) developed jointly by ASTM International, the Massachusetts Medical Society, Health Information Management Systems Society (HIMSS) and the American Academy of Family Physicians, are intended to improve continuity of patient care, eliminate medical errors and assure that at least a minimum standard of health information is transported to a new health institution or physician with the patient. The CCR, which only provides a snapshot in time, includes a standard set of information that is organized, transportable and can be in electronic or paper format. It enables each provider that the patient sees to easily access information outlined in the record and update the information when the patient goes on to see someone else.
Although the creation and maintenance of a CCR is generally left to a patient’s team of doctors, overseeing continuity of care is truly in the hands of patients. Not one else but the patient can be sure that information, continuity, management continuity and relationship continuity is maintained. and a part of the health care that they receive. Because we all have so many doctors involved in our care, it takes an empowered patient to assume the responsibility for insuring that the CCR or an equivalent personal health record is available at the point of care; that the care team knows the details of the case; and that medical decisions are coherent, consistent and communicated ..
I totaly agree with you
and we must control our medical and health information because patients (ourself) are the central point of care
I work since many years about that with the “Phorea Medipad Project”: a wearable “smart-object” for communicate & improve information of his care in partnership with the health professionals, and for organize and follow his health and disease
Sounds like an interesting device. Where can I get more information about it?
The California Health Care Foundation has made available a patient-centered, continuity of care document *with notes from the design process* to help others emulate.
thanks for the tip.
Hello Nancy, my name is Alexandra. This is an excellent piece. Thank you for writing it. Your last paragraph: “Although the creation and maintenance of a CCR is generally left to a patient’s team of doctors, overseeing continuity of care is truly in the hands of patients. Not one else but the patient can be sure that information, continuity, management continuity and relationship continuity is maintained. and a part of the health care that they receive……” particularly speaks to me….this is such an incredibly important message to get out to the public. I look forward to following your work. All best wishes.