Letters.

Letters. A CALL TO ACTION: PATIENTS' ACCESS TO CLINICAL TRIALS Finding more effective and less toxic ways to prevent, diagnose,and manage the causes of premature life threatening diseases is a goalnearly everyone can embrace with enthusiasm. Evidence-based medicine evidence-based medicineDecision-making 'The use of scientific data to confirm that proposed diagnostic or therapeutic procedures are appropriate in light of their high probability of producing the best and most favorable outcome'.See Meta-analysis. relies on the accumulation of reliable and gene ralizable data. Efficacydata gathered through clinical trials, and especially randomized ran��dom��ize?tr.v. ran��dom��ized, ran��dom��iz��ing, ran��dom��iz��esTo make random in arrangement, especially in order to control the variables in an experiment. clinical trials, are considered the gold standard of evidence-basedmedicine. One of the greatest barriers to the rapid completion andgeneralizability of clinical trials is the difficulty of matchingclinical trials with people who are eligible, willing to considerparticipation in a clinical trial, and from diverse backgrounds. Respectfor maintaining patients' privacy, and increasingly narrowdefinitions of how this privacy will be protected, has increased thedifficulty of matching patients and trials. The goals of submitting the summary of the National CancerInstitute-sponsored clinical trials education workshop for socialworkers were to broaden the circle of social workers who are aware ofthis issue and to increase their understanding of clinical trials. Theeditors of Health & Social Work embraced those objectives andfacilitated their achievement by inviting respected leaders in the fieldto offer counter viewpoints (see Health & Social Work, August 2001).Each counter Viewpoint author offered an important perspective thatfurther expands the breadth of readers' knowledge. One articlecannot do justice to the complexity and nuances of the issue. Eachcounter Viewpoint author contributed considerations of which socialworkers should be aware and options that they should weigh, whether theyare already involved as members of clinical trial teams or justbeginning to contemplate what role is right for them. A review of thetopic would be incomplete without these diverse opinions. Readers may wish to consider two additional points. First, whenweighing the risks of participation in specific clinical trials, we mustnot be naive about the risks and benefits of many current therapies thatare considered today's state-of-the-art interventions. For example,effective treatments do not exist for some cancers or advanced stages ofcancer at diagnosis. Standard therapies for other cancers are effectivefor only a small percentage of those battling the disease. Even whenrelatively effective therapies do exist, some patients do not respondfavorably. Of equal concern, standard therapies are often severely toxicand disfiguring and can be life threatening. Today's therapies aresucceeding in creating long-term survivors, but many of theseindividuals will spend the remainder of their lives coping with severeperipheral neuropathy Peripheral NeuropathyDefinitionThe term peripheral neuropathy encompasses a wide range of disorders in which the nerves outside of the brain and spinal cord—peripheral nerves—have been damaged. , lymphedema, chronic fatigue, radiation-inducedscarring, incontinence, impotence impotence(im`pətəns), inhibited sexual excitement in a man during sexual activity that, despite an unaffected desire for sex, results in inability to attain or maintain a penile erection. , disfigurement dis��fig��ure?tr.v. dis��fig��ured, dis��fig��ur��ing, dis��fig��uresTo mar or spoil the appearance or shape of; deform.[Middle English disfiguren, from Old French desfigurer , and other sequelae sequelaeClinical medicine The consequences of a particular condition or therapeutic intervention oftreatment. Another concern for cancer survivors Cancer survivors are those individuals with cancer of any type, current or past, who are still living. The National Coalition for Cancer Survivorship (NCCS) pioneered the definition of survivor as from the time of diagnosis and for the balance of life, a person diagnosed with is the ever-present fearof recurrence. Today's therapeutic interventions manage cancer, butrarely cure it, particularly in advanced-stage cancers. Clinical trialsoffer pathways to the discovery of evidence-based therapies that offersurvivors improved quality of life along with quantity of life. Second, one of the key reasons for enlisting the interest of socialwork colleagues in clinical trials recruitment is that they so oftenwork with disadvantaged clients. Ample evidence exists to support theconviction that disadvantaged members of society were recruited totrials of questionable scientific and ethical merit. Today, however,protections are in place to prevent this on a broad scale and toidentify and stop the random rogue investigator who does not comply withthe ethical standards set by the scientific and lay communities. The fargreater problem today is that disadvantaged patients are less likely tobe offered the opportunity to participate in trials or to initiateexploration of available trials and the risks and benefits ofparticipation. Sometimes providers intentionally do not informdisadvantaged patients for a variety of founded and unfounded reasons.Other times, their exclusion is unintentional. Either way, people whoare disadvantaged are less likely to take part in clinical trials , andthis puts their community at a disadvantage when health policy makersuse evidence-based medicine to make decisions about the best standard ofcare. If members of disadvantaged communities do not participate in thecollection of evidence, there can be no assurance the conclusionsreached will be equally applicable for them. Physicians can always offerindividual patients another therapeutic option, but those treatmentoptions will be based on anecdotal data and personal impressions,generally considered the least reliable evidence for medical decisionmaking. Having social workers informed and involved in efforts to increasethe accrual of stakeholders from disadvantaged communities to clinicaltrials increases the chances that disadvantaged members of society arerepresented. Equally important, social workers informed of the formatand ethics of clinical trials research can serve as ad hoc For this purpose. Meaning "to this" in Latin, it refers to dealing with special situations as they occur rather than functions that are repeated on a regular basis. See ad hoc query and ad hoc mode. watchdogs toensure the fair treatment of disadvantaged participants. Whether social workers elect to become involved in recruitingclients to studies is a personal decision. On the other hand, theirinvolvement as ad hoc watchdogs is an inevitable consequence of theirvigilance and supportive care supportive care,n medical and other interventions that attempt to support and make comfortable rather than to cure. for their disadvantaged clients who joinstudies for which investigators may have unintentionally selected amethodology that further compromises disadvantaged participants. Bybeing fully informed of the ethical and clinical issues regardingresearch involving human subjects and knowing where to turn when ethicaland clinical concerns arise, social workers will be positioned to be ofgreatest value to the constituents they serve. Georgia Robins Sadler La Jolla La Jolla(lə hoi`yə), on the Pacific Ocean, S Calif., an uninc. district within the confines of San Diego; founded 1869. The beautiful ocean beaches, in particular La Jolla shores and Black's Beach, and sea-washed caves attract visitors and , CA