A famous celebrity, editor and housewife join together at an American Cancer Society symposium, highlighting their experiences with breast cancer.
* The network evening news interviews patients infected with the HIV virus for a new clinical trial sponsored by a pharmaceutical company.
* A teenager undertakes a local media tour looking for a suitable bone marrow donor to cure her of leukemia.
* A man who suffered a heart attack talks about his new diet, exercise program and aspirin-a-day regime to stay "heart healthy."
From the president's thyroid gland to a celebrity's substance abuse and recovery, the trials and tribulations of today's medical and psychiatric patients are increasingly tomorrow's headlines. This in-depth treatment of disease, recovery, hope and despair serves to enlighten the general population and, in many cases, may serve to prevent disease or promote healthy lifestyles in others.
But at what cost to the patient?
Patients now front-page news
The increased use of patients as sources of information for the news media can be traced to five national trends.
1. The rise of health and medical issues as news. Just a decade ago, the president's insides, and people's mastectomies and mental illnesses were not issues for public discussion. Today they are front-page news. Once these issues have been openly discussed, the flood of public discussion breaks down former barriers.
2. The rise of celebrity gossip as news. The comings and goings of celebrities used to be merely who was doing what where. Today, attention centers on who is feeling "a," being treated for "b" and recovering from "c". Once Betty Ford and Nancy Reagan came out of the "cancer closet," the door is closed for no one. Patients at every level of society are sought for commentary and personal perspective.
3. A changing population. As the life expectancy for men and women increases, health issues increasingly become a national concern.
4. The opening of laboratory doors. Recent trends have forced research facilities across the United States to open their doors and discuss ongoing clinical trials and investigations. The process of medical research is not only under the microscope of federal and other legislative agencies, but examined by business and private concerns as well.
5. Increased competition for the scarcer dollar. Today, hospitals and research labs are competing for funding. Private charities need to raise money for patient care and research. Private institutions want to showcase their patients' recovery, to fill beds. All must use the patient to demonstrate results.
These trends, coupled with the very nature of news--a vehicle which tells stories using people, process and place as key elements--encourage the increased use of patients for a wide range of organizations. These include non-profit and for-profit health-care facilities, charitable organizations, pharmaceutical companies, professional societies and individual caregivers.
Set limits to protect patient privacy
While media coverage of health issues is more open than ever, it is still important that the patient be protected from what can be viewed as an intrusive process. Clearly, the media relations professional is the person in the middle. It's necessary to balance the needs of the reporter and the demands of the medium with the rights and concerns of the patient. Throughout your dealings with all parties, two phrases must be your guidelines.
1. The patient's recovery and well-being are tantamount to everything else.
2. The media have certain needs that must be met, that may be met and that can't be met.
Since 1986, my firm has worked with a number of health-care facilities. Among them is The Renfrew Center, the nation's first residential treatment facility for women with the eating disorders of anorexia and bulimia. Located on the outskirts of Philadelphia, the 40-acre facility treats women from around the world, between the ages of 16 and 55.
As part of the center's national media relations effort, patients have been interviewed for a wide variety of programs and publications. These include the NBC network TV special "Fatal Addictions," Cosmopolitan, Glamour and Mademoiselle magazines, The New York Times, USA Today, local Philadelphia TV news programs and wire service reporters. In each case, careful steps were established to ensure the well-being and privacy of patients. These steps can serve as a useful outline for others.
In developing a comprehensive media/patient relations program, the first step must be alerting staff to the appropriate way to take a media inquiry. It should be established at all levels, from telephone operators to executive directors, that personnel do not conduct interviews "on the spot." When media inquiries come in, the health-care staffer should find out the name of the media outlet, the nature of the story and what prompted the inquiry, what questions/concerns the caller needs addressed and the deadline. In addition, are patients needed for the story? If they are, will anonymous interviews be acceptable?
Once these criteria have been established, it is important to have a patient bank from which the publicity person can pull. This bank should include those patients who have expressed an interest in discussing their situation with the media and whose professional caregivers agree such interactions will not disturb their recovery. Media relations personnel should check with the patient as to what questions are or are not acceptable.
Among the questions most patients will want addressed are:
1. Is the interview anonymous? If so, a number of steps can be taken to ensure the patient's privacy. For television one may film in shadow, and distort the face and/or voice.
2. Are additional family members or other professionals needed?
3. What subjects will the patient discuss freely or not discuss? At Renfrew, for example, some women have been victims of emotional, verbal and/or sexual abuses. Not all feel free to go on nationwide television and address these very personal issues.
4. When and where will the patient be interviewed? Some possibilities are on-site, at home or over the phone at work.
It is also important to discuss confidentiality and the parameters of an interview with the reporter. For Renfrew interviews we tell reporters the following:
"I'm sure you're aware of the fact that we are a psychiatric facility. Confidentiality is very important where our residents are concerned. That's why the patient may not want to have her real name used. (For a TV interview patients may only want to be shot from the back without real names being used.) We'll need about two days to find someone for you to interview. You'll also need to know that I will be present and will interject if I see that the resident is becoming very uncomfortable. The resident will know that she can tell you that she doesn't want to discuss certain issues. I need you to respect that and not press her on it. Secrecy is a big part of eating disorders. The interview takes a lot of courage."
Put patient at ease
Make sure prior to any interview to put the resident at ease. Point out that:
1. The patient controls the interview.
2. The patient doesn't have to discuss what he or she doesn't want to, and can say "I would rather not talk about this" to the reporter.
3. You (or another media relations person) will be there and will intervene if you see the patient getting uncomfortable and/or the reporter breaks agreed parameters.
4. The reporter is friendly and you don't expect problems. He or she understands issues of confidentiality and is sensitive to the patient's needs.
5. Questions will be fairly general. Some common questions Renfrew patients are asked include age, occupation, marital status and number of children. Is the patient anorexic or bulimic? How long has she suffered from the disorder? How did it start? If the patient is bulimic, what was a binge like? How much food did she consume? How often did she purge? If she was anorexic, how did she restrict herself from food?
Inform residents of arrangements
In making arrangements to bring the media to a health-care facility, take the following steps:
1. Let the staff know.
2. Advise residents a reporter, photographer or cameras will be on-site. Advise residents of the schedule and tell them that residency personnel will do their best to protect their identities. Knowing the schedule will help residents avoid places where they can be seen by the media.
3. Send a schedule to all clinical staff and post one in a visible place for the residents.
4. On the day of the visit, make sure that the designated staff person is always with the media. If there are TV cameras, make sure that the cameraperson does not carry the camera on his or her shoulder--many people will think that filming is going on when in fact the camera is off.
5. If shooting or photography is taking place outside or in an open area, make sure that staff people are stationed by access doors. This will prevent residents from accidentally walking into a shot.
After four years and more than four dozen patient interviews, I am still amazed by how personal, direct and candid many patients are with their life stories. Some interviews may not happen, due to a patient's privacy concerns or the media representative's deadlines. But by dealing with all groups directly, and carefully playing the role of the person in the middle, a public relations professional can satisfy everyone's needs, including the public's right to know.
Jonathan Schenker is senior vice president, media services, Ketchum Public Relations, New York, NY.…