A New Approach in Chile
Many Enroll-HD sites are located at academic medical centers—institutions with medical schools and teaching hospitals, and often physically linked to elite universities. But the first study site to open in Chile is quite different. It is located at CETRAM, a unique patient-centered clinic in a working-class neighborhood in Santiago, the country’s biggest city. Since it launched at the end of 2013 it’s become the largest site in Latin America, with 80 people participating in Enroll-HD.
“Enroll is very important to us—it’s a new thing to offer,” says Daniela Alburquerque, executive director at CETRAM (Centro de trastornos del movimiento, or “Movement Disorders Center” in English). Participants “have the possibility of being part of something bigger that has benefits for all. It’s not only for you, for your family, but for all.
This community approach is part of the philosophy of CETRAM, a movement disorders clinic founded about 15 years ago with the aim of encouraging more collaborative relationships between medical professionals and families dealing with disease. (They don’t use the term “patient,” and refer instead to “users” or just “people”.) The idea is to replace the traditional hierarchical relationships of medicine with a more grassroots approach in which health professionals and people seeking treatment are all part of a team.
The clinic was founded with the help of the University of Santiago, which offered space in an old hospital. In the beginning only four people were involved—including Alburquerque and neurologist Pedro Chana, now CETRAM president (they are husband and wife). They worked closely with movement disorders patients’ organizations to shape the vision of this new style of clinic. “People with disabilities are the most important part of the process,” says Alburquerque (she spoke on behalf of herself and Chana during an interview in English). “They have developed the process of rehabilitation and medical support from a family and community point of view.
The philosophy leans on the idea of “transknowledge,” the idea that health professionals and families collaborate to learn from one another and improve health. “People go to the doctor believing that doctors know more,” she says. “That’s not true. We are professionals, but at the same time people know about their own disease, their suffering.” The goal is to empower people to talk about their own experience and share their knowledge to improve health care.
Some doctors may think the idea of sharing power with the patient is naïve or misguided, says Alburquerque, but she and Chana note that the authoritarian approach used by some old-fashioned practitioners rarely works very well.
“When a user comes out of your office, they do whatever they want or need”—not necessarily what the doctor orders.
The team approach
Today CETRAM has grown to a staff of 50 medical professionals and more than 3,000 users each year, about 200 of whom have HD. The clinic has a close relationship with the university: Most of the CETRAM staff also have titles at the university, and medical students, movement disorders fellows and rehabilitation medicine students all come to the clinic to learn. Alburquerque, an occupational therapist, is also the coordinator of the occupational therapy degree program at the Medicine Science Faculty at the university.
In addition the CETRAM website hosts an open-access library of research and coursework in movement disorders, and many clinicians are also involved in research.
A person treated at the center for the first time will meet with a group of experts; a neurologist or movement disorder specialist, a rehabilitation specialist, usually a patient advocate from a disease association, and perhaps a student as well. Family members are encouraged to be part of this meeting.
The goal is a comprehensive assessment of all the needs in a person’s life, to invite a broad discussion about values rather than focusing on one specific physical symptom, says Alburquerque. “The disease is only part of the problem,” she says. “Someone might say, ‘I have this tremor,’ and we’d say, ‘Who do you live with, and where do you live? Do you have problems with money, with education?’ You get the big picture of the quality of life, the real problems.
Following the assessment the team may suggest speech therapy, physical therapy, and even community-based rehabilitation, in which the specialists and physicians support people at home.
Help for HD
For people with HD there is now another resource: A day care center where people with diagnosed disease can be looked after, meet other HD families, and participate in therapy. The center was the inspiration of Rodrigo Osorio, the president of the Agrupación Chilena de Huntington, a nonprofit disease association. His intention was to help people with HD who have little other support. “The dream was to do something for people who have HD, especially people who are in a very bad situation not only because of the disease, but have no network or family—because the family was destroyed by the disease,” says Osorio.
Setting up a day care center wouldn’t only improve the quality of life for people dealing with HD. It would also provide education, helping family understand the disease, and allow family members to work rather than be full-time caregivers.
The people at CETRAM were interested in Osorio’s idea. With support from officials in the Chilean government and a contribution from the Swiss embassy, Lugar Pura Vida (“Space for pure living” is a rough English translation) was launched in 2013 in a cottage right next door to CETRAM.
(Osorio, a businessman, describes it as a “joint venture.”) Now, about 15 people come each day, ferried from all over the city by the center’s van. They’re given lunch—essential for some people who may not have enough to eat at home—and engage in activities like gardening and music.
It’s the first such center in Chile, says Osorio, and he hopes that the model can be expanded to other sites and even other nations.
The collaboration between the Chilean HD organization and CETRAM also opened up the possibility of hosting an Enroll-HD site. The structure of the Enroll-HD platform, where de-identified data is made freely available to any legitimate researcher, fits well with their philosophy.
Osorio says that the Agrupación has been introducing the study to the HD community, to explain how it works and why people might want to join. “Users and family know this is important, not only for them but for all the community with HD,” says Alburquerque. “It really is possible to do academic research and work with people in equality and in a respectful relationship.”
This story was originally published in the Spring 2016 issue of Enroll!