Fundamental 5: Be transparent in your communication.

5) Be transparent in your communication. Give honest, clear, and objective information to others. Disclose any limitations that are imposed on you about sharing information. Recommend alternate sources for information gathering.

Consumers in leadership positions are often a source of information for other consumers. It is essential that the information these leaders provide is straightforward, understandable, and, as discussed in the previous principle, completely honest. Sometimes, however, consumers may seek an opinion or an assessment that the consumer leader is not qualified to make, or is prohibited from offering because of her more formal role in an organization. When that happens, honesty must also take precedence.

For Example...
Nora works as the Consumer Advisor on the oncology service at a major research and teaching hospital. She has been cancer-free for nine years and feels very blessed to have a job where she can help others who are undergoing treatment. Nora considers herself to be a full member of the health care team. She has great respect for all the professionals she works with, many of whom cared for her when she was ill. She realizes that each brings a particular expertise to the team, and that each has a perspective that reflects their individual professional disciplines. Nora believes that her perspective — as someone who has gone through treatment — enables her to make a unique contribution to the team.

Nora describes her role as "part friend, part advocate." She works very hard to be as available as possible to patients. Because of her warm personality and personal experience she is a great favorite with patients. And they often ask her what she would do under a given set of circumstances. Which treatment would she choose? Who is a better oncologist -- Dr. Y or Dr. W? Is that clinical trial worth the risk? Nora has talked with her supervisor about how to answer some of these difficult questions. She knows that any information she offers must be based in fact.

One patient, Mrs. Smith, has had a recurrence of her cancer. She and Nora have known each other since Mrs. Smith was first diagnosed. They have become very close over the years, and Nora is deeply saddened when Mrs. Smith's cancer returns. She knows from her participation in the team's case conference that Mrs. Smith's prognosis is very bleak. The doctors on the team want Mrs. Smith to enroll in a new, very experimental clinical trial. Nora knows that the new protocol is extremely demanding and that the side effects of the treatment are severe. She knows, as well, that the trial is the only treatment option left for Mrs. Smith. Nora thinks that the risks of the trial outweigh any potential benefit, and does not believe that Mrs. Smith should participate. Nora knows, however, that Mrs. Smith must make her own decision and that her job is to offer information and support.

Mrs. Smith approaches Nora about whether or not she should agree to participate in the trial. Nora determines how much Mrs. Smith understands about the clinical trial and then describes the specifics of the protocol. She gives thorough and detailed information about the regimen and the anticipated side effects. When Mrs. Smith continues to push for her opinion, Nora reminds her that this is a research institution and that as an employee she must respect the mission of the hospital. Finally, Nora suggests that Mrs. Smith call several of the cancer advocacy groups for their perspectives on this new clinical trial. Nora says that those groups may have information that could help Mrs. Smith reach a decision.

This example demonstrates one of the most challenging aspects of the consumer role — balancing loyalty to other consumers with loyalty to the employer. Nora is concerned that the risks to Mrs. Smith are greater than the potential benefits of the clinical trial. However, she is bound by her responsibility to the hospital to support the physician's recommendation. Nora deals with the conflict by arming Mrs. Smith with honest, clear, and objective information and with a connection to others who can provide alternative information and help her with the decision-making process. Nora also acknowledges her limitations as an employee of the hospital.