Abstract and Introduction
Abstract
A cancer program specialized in treating patients with multiple myeloma developed a participatory care model. Various strategies were used to foster patient participation, including a) partnership in care management (treatment decisions and location of care; eg, hospital or outpatient unit), b) significant caregiver involvement (family and friends), c) patient/caregiver education and networking, d) emphasis on therapy in the outpatient setting, e) patient self-administration of intravenous and subcutaneous medications, f) a patient-initiated quality improvement program, g) an open access medical record policy and online access to test results, and h) uninterrupted access to program clinicians, even after discharge to another city or state.
An independent evaluation indicates this program is a US leader in the field of outpatient cancer therapy. This care model is well received by patients, caregivers, health care workers, and the hospital, and it is associated with superior clinical outcomes.
Broadly applied, this model could lead to a changing paradigm in health care delivery with major benefits to patients and lower costs for health care in the US.
Introduction
The authors describe a model of health care delivery for patients with multiple myeloma (MM) in which the patient is a partner and active participant, rather than a mere recipient of care. The authors compare this model to the care provided at various national institutions and report the positive results achieved using this participatory care model. Finally, the authors propose that the application of this model to other medical conditions has the potential to positively impact not only patient outcomes but also the cost of health care delivery.
Indeed, the cost of US health care continues to soar, with negative implications for the economic health of the country.[3] Attempts to curb costs are now focused on rationing health care as done in the UK, including cost-benefit analyses of drugs and procedures by expert commissions, use of generic medications, and emphasis on primary care physicians for every citizen. These measures, however, did not prevent the doubling of the cost of the British health care system[4] and have been associated with poorer outcomes; for example, the survival of patients with breast cancer treated in the UK is substantially lower than their US counterparts.[5 6] Medicare has also recently instituted a system of penalites when certain benchmarks are not met (eg, as of October 1, 2008, Medicare no longer pays for what it considers "never events," ie preventable inpatient complications including pressure ulcers, falls, trauma, and others).[7 8] Moreover, the latest health care overhaul was proposed without significant input from patients. Without buy-in from all stakeholders, even a great design can be doomed to failure. Fortunately, many patients have taken the initiative to become better informed and to participate in making decisions about their health, a move facilitated by the widespread access to credible online medical resources. But provider support for this important patient-initiated participation process is limited.
J Participat Med. 2011;3 © 2011 Society for Participatory Medicine
Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.
Comments