Living out loud with HIV

Student’s assignment strengthens future of local nonprofit

With the explosion of social media tools like Facebook, YouTube, Twitter and MySpace, the internet has become a place where people of all ages, genders and ethnicities seek advice.  For the more than 1.1 million people living with HIV in the United States, the internet is addressing their concerns about paying for care and treatment, disclosing their status to others, and preventing transmission.

However, prior to 2002 very little HIV/AIDS advice on the internet came from individuals living with HIV, leaving those living with the disease without role models. That year, The Positive Project (TPP), a Denver-based non-profit was founded to serve as a resource for those living with or affected by HIV/AIDS, their providers and others.  TPP uses the stories of people infected/affected by HIV/AIDS to raise awareness, reduce stigma, promote prevention, encourage testing, enhance care, and improve their quality of life.

“In our practice we were hearing a lot about the struggle of being HIV positive, but we were also hearing a lot of success stories about people’s positive experiences with disclosure, treatment and coping,” explains Dr. Tony Miles, co-founder and director of The Positive Project. “We needed to find a way to connect positive people with others who could really benefit from hearing their stories.”

With two HIV positive men and two HIV positive women willing to share their stories with the public TPP was started.  At first, Dr. Miles and Dawn Shearer, co-founder and manager of TPP, wanted to film interviews with people living with HIV and produce educational videos that could be used in clinics and schools.  However, as trained therapists, Dr. Miles and Shearer didn’t know anything about video production.

“At first it was very hard for me to take my therapist hat off,” explains Dr. Miles. “Interviews were very unstructured and were geared more toward footage you would find in documentaries, but we didn’t want to produce a documentary. We wanted to get good footage that could be used in short clips.”

Now eight years later, TPP has interviewed more than 150 people living with HIV. The archive holds more than 5,000 free video clips of people whose ages range from nine to 70.  These video clips capture real people talking about how they found out they were HIV positive, how they disclosed their status, how they are coping, what it is like to be on treatment and many other topics.

“Education materials today are dated and do not engage real people,” Dr. Miles states. “In The Positive Project videos you are not hearing actors. You’re hearing real people and having a genuine conversation with those impacted by the disease.”

Finding interviewees was not difficult for TPP. By attending national HIV/AIDS advocacy conferences, Dr. Miles found there were hundreds of people who wanted to share their stories. “We’ve always had more people than we can accommodate,” he explains.

Now that TPP has created a link between those struggling with their diagnosis and those successfully living with their status, the organization is searching for ways to strategically market and grow their resources.

Positioning the organization to grow

Last fall, in the Colorado School of Public Health’s Public Health Administration course taught by Sara Miller, students were asked to complete final projects that responded to a public health need within the community. While most students identified their own projects, Josh Gordon accepted a capacity building project offered by The Positive Project.

“At the time The Positive Project was looking for increased funding and support,” Gordon says, a master of public health student. “They were relying on individual donations and donated staff time, but they really wanted to get down on paper a better plan for the future.”

As a research specialist focused on HIV/AIDS clinical trials at Kaiser Permanente in Denver, Gordon was interested in learning the theoretical and program planning aspects behind the studies.  Gordon’s interest and TPP’s need matched perfectly, so he began developing a business plan for the organization.

“This project was a great way for me to look at the other side of HIV by focusing solely on prevention rather than treatment,” explains Gordon. “I’m normally on the clinical side so it gave me a different perspective on clinical trials research.”

With no experience developing a business plan, Gordon found the project to be daunting and intimidating. He had never created a budget, marketing plan or business strategy, yet he was tasked with conducting a needs assessment, developing measurable goals and objectives, and writing an operational budget and implementation plan.

“Public health practitioners have amazing dreams of how to improve health in our communities,” says Miller. “To move these dreams into reality, critical business planning skills are needed. It is vital for practitioners in public health to apply business efficiency and accountability tools to public health practices.”

Utilizing previous TPP grant applications, financial reports and in-person and e-mail interviews with the organization’s directors, Gordon projected the future of the organization in a 5-year business plan. Objectives in the plan include: increasing funding and funding diversity; increasing the reach of TPP through marketing; and obtaining interviews from a broad, culturally and ethnically diverse population.

“We haven’t had help pausing and looking at the management and communication mechanisms of the organization,” says Miles. “Josh put ideas on the table of how he could help our organization. We’ve never had a formal business plan, but we realize this is crucial for our growth and self-sufficiency.”

From business plan to strategic plan

While Gordon was developing the business plan TPP launched a new Web site with the hope of reaching more people.  The Web site hosts the organization’s searchable video archive, which is viewed by people as far away as Argentina, Canada, India, Uganda, Niger and Ethiopia.

“The new Web site has blown the doors off about what we can do and who we can reach,” states Dr. Miles. “For most people in other countries they can’t imagine a place where people can be out about their status.  This now gives them hope that things can change in their countries.”

Today, TPP is working with John Snow, Inc. (JSI/Denver), a public health research and consulting firm, to develop a long-term strategic plan.  In order to develop that plan, JSI/Denver consultants utilized Gordon’s business plan as a launching point.

“It’s really helpful to get an outside look to see how we can improve as an organization,” states Dr. Miles.  “What Josh developed was useful and informative.  It’s crucial to have these pieces in place right now.”

Gordon didn’t stop working with TPP after his public health administration project.  His business plan and positive relationship with TPP launched his Capstone Experience, or culminating project for his MPH completion in May 2010. Currently, Gordon is researching funding opportunities for the organization and plans to write and submit a grant application by the end of the semester.

“We hope the Colorado School of Public Health can continue to help us identify needs and educate us about how they can help,” says Dr. Miles. “I had no idea what the students at the school could do. Now I wonder what else they can do.”

The Public Health Administration class continues to reach out to local non-profit and government entities, explains Miller. “The projects that have partnered with these entities have been very successful for both the organization and the student.  Students offer fresh ideas, new energy, and the ability to bring free ‘consultation’ from instructors, faculty and students here at the Colorado School of Public Health.”

Visit The Positive Project’s Web site to learn more about its work.