Access Web portals Discuss with case managers Review literature and brochures Make inquiries about coverage
With provider
Agree on appropriate entry mode Discuss rates and fees Observe and/or discuss philosophy and attitudes on cost and aggressiveness of treatment
Study journal literature Review guidelines together Use joint decision aids Talk through behaviors and preferences
Source: Reproduced from: Patient Outcomes Research Teams (PORTS): Managing Conflict of Interest. (1991). Institute of Medicine, Washington: National Press, p. 21. Courtesy of the National Academies Press, Washington, D.C.
Patients acting alone, or family members or other advocates acting on their behalf, can engage in information searches and decision making by consulting any number of sources of information. Comparative databases on quality and cost for hospitals and other providers are available. Patients can talk to their neighbors, professionals, or local experts.
Many websites are available that are devoted to specific symptoms and diagnoses, such as the American Diabetes Association (www.diabetes.org) and Patients Like Me (www.patientslikeme.com), as well as the medical literature and databases of governmental and professional guidelines (domestic and international). These can provide access to reports backed by evidence that falls along the evidence hierarchy, including reports from sources with major potential biases, such as television ads and vendor websites.
Then there are information providers fulfilling the role of honest broker, such as the insurance exchanges authorized under the ACA and administered either by the states or the federal government. Many payers maintain Web portals where enrollees can find tips on certain diagnoses and conditions, and they may also provide case managers for patients with certain chronic diseases or catastrophic illnesses. Again, the validity and level of evidence can vary a great deal.
The collaborative relationship between the provider and the patient envisioned in this movement is relatively new. So far, demonstration efforts have identified major barriers to widespread adoption, especially the drain on provider time, lack of payment for the time used, physician perceptions about patients’ ability to understand evidence, lack of relevant information, and patients’ preferences for a provider who acts as an authority figure (Lin etal., 2013; Yergian et al., 2013). A study of the use of Web-based decision aids in the NHS indicated that “clinicians did not feel the need to refer patients to use decision support tools, web-based or not, and, as a result, felt no requirement to change existing practice routines” (Elwyn et al., 2012).A review of the literature about the advantages and disadvantages of shared decision making and its effects on outcome in mental illness services is provided in SAMHSA (2011).
An interesting finding in the research on this change in the health care culture is that although physicians have the greatest influence over patient behavior, other clinic staff and off-site personnel can contribute successfully to the support of shared decision making (Veroff et al., 2013; Courneya,Palattao, & Gallagher, 2013).
To support collaboration, the patient and the physician must have an understanding of how, when, and where the patient will receive services, such as by telephone, email, in the physician’s office, or at an alternative service site. They must have a discussion of their philosophies and attitudes toward issues such as aggressiveness of treatment and costs of care. Some patients will want to control costs, whereas others will be uncomfortable when clinicians focus on costs in clinical decision making (Sommers et al., 2013). However, cost will play an increasingly important role in informing consumer behavior in the future.
9.7 DETERMINING VALUE
Most randomized, controlled clinical trials are conducted on proposed prescription drugs for which patent protections provide a potential monopoly. In such trials, U.S. researchers only need to establish a pharmaceutical’s safety and efficacy. By comparison, medical devices can piggyback on the testing of similar devices and procedures that do not require licensing. Manufacturers usually support studies in which a placebo is the control. This implies that the product being tested just has to be better than doing nothing at all. Determining whether a new product has value greater than that of existing products requires a comparative effectiveness study that includes cost comparisons. Because of the reluctance of manufacturers to conduct such studies, the government has had to step in. This is a relatively recent development. In 1989–1990, the predecessor to AHRQ issued a series of contracts for Patient Outcomes Review Team (PORT) studies that were quite controversial. A list of the initial studies is shown in Table 9-4. These studies tended to evaluate high-volume and/or high-cost interventions, and the concept was not popular with the provider community. Some of the issues addressed by these studies are still open to debate. In fact, after the publication of a study showing that it did not matter what type of provider treated acute (without sciatica) low back pain, surgeons almost succeeded in getting Congress to defund the agency. By 2008, however, concerns about value had become so great that the American Recovery and Reinvestment Act (ARRA) contained significant funding for comparative research, and the ACA established the new Patient-Centered Outcomes Research Institute (PCORI).
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