From the first days of the epidemic some twenty plus years ago, one thing that set HIV apart from other illnesses was the degree to which consumers influenced HIV policy and care. Many people feel that if it weren't for the grass root efforts of consumers early in the epidemic, advances in the diagnosis, treatment and care of HIV would have been much slower. So it's not surprising that HIV experts and care professionals agree that consumer involvement is an essential part of HIV care and policy making today. In fact, in a recent survey of HIV/AIDS service programs, 93 percent said they had processes in place to gather programmatic feedback from their consumers with regard to program development, program implementation, and quality improvement. Let's explore the importance of consumer involvement, ways to involve consumers, barriers to consumer involvement, and the benefits of having consumers take part in the decision-making process.
How Can Consumers Become Involved?
We all agree that consumer input and involvement is important. But how do you get that input? How do consumers get involved in the day-to-day business and operation of an HIV program or medical practice? There are several ways, involving both direct involvement and indirect involvement. Here are just a few:
- Patient Satisfaction Surveys: In order for programs and medical practices to improve, areas that need improvement must first be identified. Patient satisfaction surveys are an indirect way to achieve this. Knowing what the patients like and dislike about a program or practice helps identify ways to improve. These surveys can be given out at clinic visits or as mailings. They should be anonymous but some demographic information should be included such has age, gender, and ethnicity to help identify areas of improvement that are important to specific populations within the practice.
- Patient Needs Assessments: This differs from a satisfaction survey in that it asks the consumer exactly what he or she needs and what services are important to them. Again, this can be done in the form of mailings or written questionnaires distributed at clinic visits. Most often these are done anonymously, as are the satisfaction surveys.
- Patient Liaisons: This direct means of patient involvement involves one consumer acting as a bridge between the medical staff and the patients in the practice. Communication can be enhanced between two consumers who feel they are going through the same issues. Patients can bring questions and ideas to the patient liaison, who in turn can bring that information to the practice or agency. Patients often feel more comfortable speaking with another consumer than with their own doctor. The liaison bridges the gap between staff and consumer.
- Advisory Board / Committees: Consumers can get involved with committees within the practice or agency, or sit on local or regional advisory boards, in order to act as an advocate for other consumers. This direct means of consumer involvement allows the voice of consumers to be heard not only within a single agency or practice but on a wider scale.
- Consumer Focus Groups: Focus groups bring together several consumers who share concerns and ideas with other consumers. Usually six to ten consumers with similar needs meet to discuss the needs of their particular group. For instance, a focus group of women can be formed to share needs and ideas regarding HIV and women. The same can be done with members of the transgender population, or people over 50 who are living with HIV. Focus groups are consumer-driven with a moderator who guides but does not contribute to the discussion.
The Benefits of Consumer Involvement
Consumer involvement has long been seen as extremely beneficial to HIV care. So much, in fact, that the first Ryan White CARE Act required consumer involvement as part of all programs funded by the Act. P.J. Two Ravens, MSW, an HIV social worker at the University of Michigan HIV/AIDS Treatment Program, explained that mandatory consumer involvement arose from legislators and medical practitioners ignoring the call from consumers to address certain needs.
"I think it's important that we [caregivers] never go blindly deciding what's right or ignore a blatant need." Two Ravens explained.
Consumer involvement benefits HIV programs in many ways. Some of these benefits include:
- HIV groups and medical practices hear directly from affected populations (minorities, older HIV-infected people, the transgender population, women, adolescents) about their needs and what they feel HIV programs should and should not include.
- The groups mentioned above, marginalized otherwise, are empowered by their ability to participate in their own care through consumer involvement.
- People living with HIV take a greater interest in their health and well-being when they realize they are being heard and their needs are being recognized and addressed.
- Those patients more involved know their disease better than those not involved. This translates into better understanding of medications, better adherence, better understanding of safer sex principles and practices, and more involvement in peer education.
- Programs utilizing community involvement can better understand the needs and concerns of their service population by gaining a new perspective - the consumer's perspective - regarding HIV care.
- Consumer involvement makes it easier for programs to identify barriers to care and develop strategies to remove those barriers.
