physicians and their patients need to guide their individual health care choices. To be most effective, this panel should be lodged in the Blood Safety Council (see Recommendation 2) so that both bodies can interact and coordinate their activities in order to share information about emerging risks and clinical options.
Any organization that supplies this information must adhere to accepted norms for documenting evidence. The Committee believes that the public's interest would be best served by creating one publicly accountable source of this information. This function would build on the experience of the Agency for Health Care Policy and Research, which has an established guideline development process and issues guidelines on topics such as the management of chronic pain, screening for AIDS, and management of urinary incontinence (El-Sadr, et al. 1994; Jacox, et al. 1994).
Experience in developing practice guidelines for hemophilia treatment and blood transfusion is an important element of preparedness for future threats to the blood supply. There are now well-established processes such as those recommended by the IOM Committee to Advise the Public Health Service on Practice Guidelines (IOM 1990, 1992) and used by the Agency for Health Care Policy and Research. The U.S. Preventive Services Task Force (1989) uses another system process. Guideline developers should perform a thorough literature search, identify well-designed studies, describe fully the evidence on harms and benefits, and explain the connection between the evidence and the recommendations. They should seek critical evaluation from a wide spectrum of individuals and organizations and should periodically reexamine the recommendations in the light of changing knowledge.
During the early 1980s, in its role as the guardian of the interests of the hemophilia patient community, the NHF was the principal source of information about using blood products. The outcome of the NHF efforts was that individuals with hemophilia and their families lost faith in the NHF as the rightful steward of their interests. The reasons discussed in Chapter 7 include the NHF's unwavering recommendation to use AHF concentrate, its dependence on funds contributed by the plasma fractionation industry, and the composition of the NHF expert panel (MASAC) that formulated treatment recommendations (e.g., the panel's lack of infectious disease experts and decision analysts).
Toward the end of providing the highest-quality, most credible information to patients and providers, the Committee makes
Recommendation 14: Voluntary organizations that make recommendations about using commercial products must avoid conflicts