“The American health care system is totally inadequate to care for this type of problem,” asserts Kenneth P. Johnson, MD, professor and chairman, department of neurology, University of Maryland School of Medicine. Johnson is referring to multiple sclerosis, which, like other chronic illnesses, requires a health care team approach to treatment. And the team is not just for the professionals. For treatment to be as successful as possible, patients and their families must be included as partners in the process, say Johnson and his colleagues.
To educate physicians, nurses, and other health care practitioners about new data on therapies and the team approach to MS treatment, Rockpointe Broadcasting, a Washington, D.C. — based communications company specializing in multimedia productions, organized a two-part live, interactive satellite broadcast.
The program, which took about three months to produce and aired in September, consisted of an hour-and-a-half broadcast for patients, caregivers, and families, preceded by and a two-hour broadcast for professionals. It was produced like a TV show, with panelists giving their presentations in a studio, which were beamed live to 325 hospitals and MS centers across the country. Question-and-answer periods were sprinkled throughout the broadcasts, with questions pouring in from all over the country via e-mail, fax, and telephone. Close to 6,500 people participated, including about 2,000 professionals and 4,500 patients.
For participating hospitals, the dual broadcast was an opportunity to do community outreach by inviting patients and local neurologists. Hospitals also garnered publicity. For instance, The Times Leader of eastern Ohio wrote up the program at local Wheeling Hospital.
“Some MS patients don't want their families to know about their disease. You have to be careful how you market.” — Thomas Sullivan
The organizations participating reflect the team approach the program espoused: The professionals' program was jointly sponsored by the University of Maryland School of Medicine, the Consortium of Multiple Sclerosis Centers, the International Organization of Multiple Sclerosis Nurses, and Rockpointe. In addition to offering CME credit, the program offered CE credits to nurses, pharmacists, and psychologists.
The Patient's Perspective
Both broadcasts included interviews with patients describing how the disease affects them — and how they want to be treated by their doctors. “I wish my doctor had explained to me what the progression of the disease would be, why I would lose sensory perception, why I would be fatigued,” said one patient. “I would have felt much better.”
It's critical that physicians hear the patient's perspective, says Johnson, who served as program chair, and it also helps patients to hear what others are going through. “Patients help other patients with coping skills. MS is a very lonely experience.”
Both programs also emphasized that health care professionals must take into account the patients' quality of life, rather than concentrating only on drug therapies. That's where the team approach is critical.
And while some say physicians are reluctant team players, Johnson says the fault lies with the system.
“Most neurologists schedule 15 minutes for a return visit — hardly enough time to find out the main problem and write a prescription, to say nothing of helping the patient look for social services, someone to help with urinary problems, or even help with transportation so a person can get out of the isolation of the house.”
Forming a partnership with patients and their families is difficult for a lot of physicians, agrees Kathleen M. Costello, MSToday program co-chair and clinical director, MD Center for Multiple Sclerosis, University of Maryland Medical Center. “That is not at all intended as a negative statement. They see many patients, with a variety of neurological conditions.” Nurses can help physicians form those partnerships and provide patients with education and resources, says Costello.
Take a Drug Holiday
Panelists reflected the team approach to treating MS. Costello is a nurse, her fellow panelists included a professor of neurology and psychology, and a physical therapist's perspective was included in a video clip.
The panelists didn't emphasize the patient/physician partnership because it's trendy. Physicians need to be able to discuss embarrassing symptoms like sexual dysfunction and convince patients that the drugs — which patients have to inject themselves — are worth the pain and hassle. Non-adherence to drug therapy is a huge problem for MS patients, panelists told participants. They explained the various reasons why, and gave practical suggestions for helping patients stick with their regimens — such as giving them a ‘drug holiday” — a brief break from treatment.
Make It Compelling
Judging by the participation of patients, the program was a big success: 500 questions poured in from patients, says Thomas Sullivan, president of Rockpointe. “We were swamped.”
To do an effective combined patient/physician program, it's important to select an issue that is interesting to the audience, he says.
“I think [CME providers] want to do things for the sake of doing them,” he says. “You have to have a compelling story, compelling new data.”
In this case, panelists discussed the results of the first study comparing the efficacy of the three drug therapies (a study that was not funded by a pharmaceutical company). The patient population has to be outspoken and organized, Sullivan adds. MS patients, for instance, are typically young, well-educated women who are knowledgeable about the disease.
Give 'Em Choices
Rockpointe offered the program in three formats. People could participate via satellite broadcast from a hospital or MS center, or they could tune in via audioconference or the Internet. “I don't recommend doing Internet-only events,” Sullivan says. “The value of the Internet is not that it's live, but that there is access 24/7.” In fact, the satellite broadcast was by far the most popular format for health care professionals (see sidebar for breakdown).
After the broadcast, Rockpointe created ancillary products for physicians and patients, including videotapes, a Web course, audiotapes, and CD-ROMs.
Rockpointe marketed the live broadcast to its network of 2,200 hospitals and also through mailings to physicians, nurses, and patients who had been identified as interested in learning more about MS. Sullivan used mostly snail mail, with e-mail reminders. “Direct mail is more effective,” Sullivan says. “I don't like getting e-mails from people I don't know. It's especially sensitive for patients — some MS patients don't want their families to know about their disease. You have to be careful how you market.”
Fair Balance — For Patients
Consideration was also given patients regardingdisclosure. As CME providers well know, disclosures of faculty financial relations with pharmaceutical firms and discussion of off-label use are required for professional education. MSToday also included disclosures of faculty financial relationships in the patient syllabus. Such disclosure is a policy of the Consortium of Multiple Sclerosis Centers.
“We're very focused on fair balance,” says June Halper, executive director of the Consortium. Acknowledging that the program was “pretty focused on the drug Copaxone, [which is made by commercial supporter Teva Neuro-science], she adds, “that is understandable.” Halper reviewed the program outline and faculty information for fair balance; the program also had to be approved by her executive board.
While Halper says she has encountered problems working with other communications companies, she stresses that Rockpointe is “very, very good.” She also gives Teva Neuroscience high marks. “It is one of the finest companies in terms of hands-off [support]. A lot of times a company gives you a grant and they have to have control,” she says. “Teva doesn't touch it. They are very ethical.”
The live satellite broadcast at hospitals and MS centers was by far the favorite choice for professional participants in MSToday. Here's the breakdown:
- Hospital sites: 1,705 participants
- Telephone: 160
- Internet: 101
- Hospital sites: 1,563
- Telephone: 2,370
- Internet: 569