Giving people access

Just imagine if you or a loved one were diagnosed with cancer or some other serious illness, wouldn't you want access to the very latest medical treatments?

by Ruth Orman, Special to The Catalyst

Patrons of the Wal-Mart pharmacy in North Charleston have an advantage.

With the press of a finger on a computerized kiosk screen, they are in touch with a world of treatment options for the seriously ill, options they probably never knew existed. And the information is opening an entirely new dialogue between patient and physician.

The information source is ACT! (About Clinical Trials), an interactive consumer health resource that makes the latest in clinical trials available to the general public.

The kiosk, the first of many such planned ACT! satellites, is an extension of a project that began in April 1996. It is expected to include several kiosks statewide, giving patients and those closest to them, access to the latest in cancer treatments, even if they do not have Internet access. The project’s initial phase, a website registered with all the major search engines, went live in mid-June 1997.

The North Charleston Wal-Mart has the greatest traffic of all the Wal-Marts in the greater Charleston area; hence, its selection as the first off-campus satellite location for this computer-driven health care newsstand.

“The kiosk is meant to do two primary things, inform people of clinical trials, hopefully increasing the number of patients being enrolled in them, and provide [health] information in an engaging, consistent manner to lay people,” explained Larry Afrin, M.D., ACT!’s primary developer. “I was looking for a high traffic, medical, community-oriented site. We want people to interact with the system and be engaged with it.”

Clinical trials are done to assess the merits of new treatments that are in an exploratory stage of development. In fact, most modern treatments go through a clinical trial stage before entering mainstream health care, and are strictly assessed before being tried in patients at all. The potential for risk is far outweighed by the potential for receiving more effective treatment of an illness, treatment that might not be publicly available for several years. And, for illnesses such as cancer, time is often of the essence.

But enrollment in clinical trials is low. The enrollment percentage for cancer patients, said Afrin, an oncologist at the Hollings Cancer Center (HCC), is between 1 and 3 percent. (They are usually relevant options not only for the seriously ill when standard treatment has failed, but for any patient facing any treatment for any disease.) Logistical factors, such as geographic proximity to treatment, the tedium and complexity of filing the necessary paperwork, and ignorance of the available treatment options, are all obstacles to patient participation.

While the service initially is not likely to improve the HCC clinical trial enrollment rate, Afrin said, his goal is that it eventually spurs more people to participate in clinical trials on their own behalf. He emphasizes that ACT! supplements, “not replaces,” individualized patient/physician consultation, and gives patients and those closest to them more knowledge in asserting the subject of available treatment options.

And it does so in thorough, yet simplified, terms. Users of the kiosk system simply press their finger to the screen to access information that includes clinical trials information and health education tutorials. There is even an audio-button that, when pressed, provides pronunciation for the more clinical terms used. While it is focused on the general public’s needs, the information in ACT! is also of interest to health practitioners. Referral resources, for both lay people and health professionals, are included.

The apparent simplicity of its operation belies the complex fusion of considerations, including audience comfort, technological details, and written content that went into the kiosk’s development.

“The material out there on the Internet about clinical trials for lay people could stand a lot of improvement,” Afrin said. “A lot of it is scattershot. When you do find it, the information is brief, sometimes it’s medicalese, technical gobbledygook. Almost all of the time it doesn’t answer all the questions that patients typically have. Information should be provided that answers peoples’ questions consistently and engagingly."

Its computer format provides for wider, more cost-efficient and effective distribution of information than traditional communication methods, such as advertisements and public service announcements, allow.

ACT!’s greatest benefit is that it is literally interactive, providing two-way communication between the public and a central health care source, even for those without access to the Internet. It can reach people in areas heretofore unable to access this type of information. In turn, they can reach out via the Internet and through dialogue with their physician to discuss treatment options for serious illness that they may never have before considered.

Since the entire system went online, Afrin estimates he has received from 100 to 200 e-mails from people spanning a range of 60 countries, all of them seeking information about treatment for serious health concerns, not all of them related to cancer.

Plans are already under way to place kiosks or on-line versions of ACT! in health care facilities statewide, including Sumter, Beaufort, Greenville, and Columbia. Afrin foresees rural health centers being another important beneficiary of ACT! kiosks. And social venues, such as health fairs, also provide the opportunity of informing patients of clinical trials.

Although clinical trials in cancer are the foundation for ACT!, trials in other areas are being explored, including psychiatry and rheumatology. Along with distribution of kiosks and Internet set-ups to other sites, Afrin said that the other research centers in Columbia and Greenville, are expected to begin contributing information about their clinical trials into ACT! within the next few months.

He is adamant that ACT! will be an objective resource for the general public, not a marketing tool, and he is quick to clarify that this project, and the kiosk, are still in an exploratory stage. The North Charleston kiosk, installed at September’s end, will have a six- to 12-month run, during which time specific patterns of use will be collected to assess its effectiveness. Two other ACT! kiosks are located on the first floor of the HCC. These sites are being used to test new kinds of kiosk technology, but they provide the same informaiton as the web site and the North Charleston kiosk. People are welcome to try out any of these kiosks.

For Afrin, whose dual background includes 20 years in computer science as well as medicine, the relationship between health care and computers has always been dichotomous. Taking that connection to the point of clinical health inquiry, and plugging it into the general public’s consciousness, is long overdue.

“You look at other industries that have to manage the amount of information that health care does, and they all rely on computers. But all of the clinical research information, by and large, is still on paper. Only now in the ‘90s are we beginning to understand we could be so much more efficient in our organization if we used computers.”

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