WASHINGTON, DC—In a land in which people would not even speak the word “cancer,” how do you start and staff a major, modern cancer center? With determination, world-class vision, and some help from your friends at the US National Cancer Institute.
That was the word from Samir N. Khleif, MD, Senior Investigator and Chief of the NCI's Cancer Vaccine Section, speaking here at a keynote address on health care in developing countries at the 2008 Breast Cancer Symposium. Dr. Khleif described how Jordan's King Hussein Cancer Center came into being, using it as an example of how cancer centers can be developed in countries with “emerging economies.”
A team from the NCI, Ernst & Young consultants, and St. Jude Children's Research Hospital had previously performed an assessment of the Hussein's predecessor in Amman, the Al-Amal (“Hope”) Center, and pronounced it “a very bad institution” that was “dangerous” for patient care, and they determined that cancer management in Jordan was “very fragmented.” Clearly, a new center and a new system was needed.
While the incidence of cancer in Jordan is about half that in the United States because of Jordan's younger population, the incidence is expected to rise dramatically by 2025, burdening the economy, the health care system, and society as never before, Dr. Khleif said.
Complicating the situation of developing a cancer center up to Western standards was the taboo against even using the word “cancer.” It was left unspoken, referred to as “the sneaky disease” or other euphemisms.
Patients were often not told their diagnosis, and for the most part, given the level of care and usual terrible prognosis, Dr. Khleif said, people did not present themselves for diagnosis or treatment—since if the disease was virtually untreatable, the theory was, why know?
Fortunately, Jordan's King Abdullah had a western outlook, and Dr. Khleif, a native of the country, was able to leverage the resources of the NCI to help out. Under a cooperative agreement between NCI and Jordan, he became the first CEO of the new center in 2002 to help develop it while maintaining his position at NCI.
But first, significant impediments had to be overcome. When a registry was begun to assess the cancer incidence and it found 4,000 new cases a year in a country of six million people “all newspapers in Jordan blasted it at the first stage, saying we should really look for what kind of evil powers are increasing the incidence of cancer,” Dr. Khleif noted.
“We were blasted almost on a daily basis for the first nine months in every single journal and newspaper in the country”—illustrating the establishment's and the public's attitudes about the Al-Amal Center and government institutions in general. So merely building a cancer center would not be enough. Perceptions about cancer care would have to change.
Setting & Reaching Goals
The goals for developing the new institution, he said, involved establishing stability and making it into a solid and safe practice from the perspectives of patients, families, and employees. And it had to be sustainable once the center was turned over to local control. To be a center of excellence, the institution would need total quality management and a high level of medical and administrative talent who would build the institution and stay there.
Building an institution aware of local needs, culture, and resources was also a critical component. “Cultural change and behavior modification were extremely important,” Dr Khleif said.
He said he expected and found tremendous resistance to these changes. Therefore, getting the public on the side of the institution was important. It involved putting the right people in the right places to show that the endeavor was serious and that the institution's mission was to provide education, training, public awareness, and research to reduce mortality, all with the highest quality and ethical standards. Retreats helped employees incorporate these values.
Ensuring High-Quality Staff
A top staff was essential to give the public confidence in the new institution, he noted, explaining that traditionally in many developing countries, nepotism is common and has often led to mediocrity in staffing at all levels of various institutions. “People in those countries are sick and tired of people in those positions being put there because they are who they are—cousins, sisters, brothers, etc.,” Dr. Khleif said.
Talented staff can be obtained through repatriation of local citizens who have trained abroad if the institution and opportunities for productivity are sufficiently attractive. Furthermore, empowerment and accountability have to be “very entrenched,” according to Dr. Khleif, if workers are to trust the system and believe that superior effort, critical thinking, and responsibility will be recognized and rewarded.
Operating on these principles, the King Hussein Cancer Center increased their physician staff from eight to 152 within two years, the majority of whom came back to Jordan from Europe and the US. Dr. Khleif advised that it was important to maintain the external ties to provide the staff with the contacts and stimulation in the wider oncology community that they were used to in the West.
For example, telemedicine was an important component in establishing a strong neuro-oncology program. Visiting professors and routine international exchanges facilitate maintaining these kinds of connections, he noted.
To cultivate talent locally, residency, fellowship, and continuing education programs and conferences for physicians and nurses were developed. “You can bring all the physicians you want, but without really strong nursing infrastructure, there is no way that you can build any institution, let alone a cancer institution,” Dr. Khleif stressed.
“Patient support programs were extremely important,” including the first hospice, palliative care, pain management, nutrition support, and home care programs in the country, as well as tumor-specific support and advocacy groups. These programs, along with access to multi-modality treatments, gave patients confidence that the new center would provide what they needed.
In addition, prevention, smoking-cessation, and early detection programs were introduced, along with public education. “You need the public,” Dr. Khleif noted—so the center started a major campaign of community outreach with cancer information.
Public Outreach Complicated by Patriarchical System
Truth telling in medicine is a big issue in the developing world, he continued. “Do you tell the patient the diagnosis? Who tells the patient the diagnosis? Do you tell them the prognosis? Do you tell them they're going to die?” Support services are essential, and even genetic testing can be a problem in a country like Jordan, which is a tribal society with strong family roles. A genetic problem detected in one member can have major repercussions for the marital prospects of the other members.
The patriarchical system also complicated the role of the physician, because many people believed that it was the role, and the decision, of the head of a family to tell a wife or son or daughter that he or she had cancer. They may have even asked that the member be treated without knowing what they were being treated for, Dr. Khleif said, noting that one day an excellent female oncologist who had trained in the US ran into his office and asked him to hide her because a family wanted to kill her for talking directly with a patient.
To change the thinking about cancer, “we addressed it in a completely different way from the usual. We wanted to go in and talk about cancer as cancer,” he said, using a very organized, multidimensional public outreach program.
The first move was to use the word “cancer” in the name of the new center—“slapped on the face of the building,” he said. “Again, we were crucified, but bit by bit, we needed to show people that actually cancer can be cured.”
Next, since people in Jordan respect high-profile people, they were recruited to endorse the concept, including the person with the highest profile in the kingdom, King Abdullah. The cancer center administration formed alliances with the media and continuously sent information to help educate and inform them.
Public outreach also included fairs for kids and contests based on reading educational pamphlets strewn with the word “cancer” so that people were exposed to it.
Success Demonstrated via Objective Measures
The King Hussein Cancer Center demonstrated its quality by objective measures of outcomes and cost efficiencies, showing that by all measures it was superior to its predecessor. Preparing for Joint Commission accreditation helped educate all staff about what was important for quality, fostered a sense of team and belonging, and built a base for sustainability of the institution, Dr. Khleif said.
Major improvements in services were instituted fairly rapidly. Between 2002 and 2005, outpatient visits increased by 364%.
International scientific participation started in 2006, with 15 abstracts presented at scientific conferences. The World Health Organization recognized the center as a demonstration model for the Middle East for palliative care. Five residency programs and four fellowship programs began. Internal medicine residents participated in the American College of Physicians In-Service Exam that included 416 US and Canadian and six foreign programs.
In the second year after starting the residency program, the institution ranked in the 95th percentile, and in the second year of participation, it ranked fourth among the 416: “So you don't need to bring people from outside anymore,” Dr. Khleif said. “You're creating from inside” by having a nucleus of very good trainers. The institution earned Joint Commission accreditation in early 2006, “one of the very few outside the US at that time.”
He said that in the end, one of the harshest early newspaper critics changed his view completely two years later and wrote, “They were right, I must say.” The critic admitted that it was proven over the two years that people must openly face the disease, and he urged the public to call the center and learn about cancer.
The King Hussein Cancer Center (www.khcc.jo) has proven to be sustainable on its own now that the original organizers, including Dr. Khleif, have left. And at the king's behest, under another joint agreement with the NCI and Jordan, Dr. Khleif is now directing development of the King Hussein Institute for Biotechnology and Cancer, a center intended to conduct first-rate laboratory research and clinical trials.
About Dr. Samir Khleif
Dr. Samir N. Khleif earned his MD from the University of Jordan in Amman in 1986, and completed a residency at Medical College of Ohio in internal medicine, after which he joined the NCI as a medical oncology fellow. He is now Senior Investigator and Chief of the NCI's Cancer Vaccine Section, as well as Special Assistant to the FDA Commissioner, leading the Critical Path Initiative for Oncology. Dr. Khleif also holds an adjunct academic appointment with the Medicine Department of the Uniformed Services University of the Health Sciences.
From 2002 to 2006, he served as the Director General and CEO of the King Hussein Cancer Center as part of an agreement between the NCI and Jordan, leading the development of the only cancer center in the Middle East into an internationally recognized comprehensive cancer center of excellence. And last year, as part of another agreement between the NCI and Jordan, he was appointed Director of the new King Hussein Institute for Biotechnology and Cancer, with the aim of developing a comprehensive cancer center and biotechnology research hub.