Topic 3:

American Parkinson’s Disease Association Center

Parkinson’s disease (PD) is a complex neurological disorder whose major

characteristics are tremor, slowness of movement, and muscle rigidity. With advancing
disease, patients may have trouble with balance and gait, as well as cognitive problems.
Awareness of PD increased in recent years when celebrities Muhammad Ali and Michael
J. Fox developed the disease.
Patients with PD are commonly referred to neurologists. However, due to the
complex nature of the disease and its management, it is common for neurologists
themselves to refer patients to PD sub-specialists. The American Parkinson’s Disease
Association (APDA) is a nonprofit voluntary health agency committed to serving the
Parkinson community through a comprehensive program of research, patient education,
and support. The goals of APDA are:

• To sponsor pioneering research into the cause, diagnosis, treatment, and cure for
PD.
• To develop a grassroots network of information and referral centers and support
groups nationwide.
• To establish fundraising chapters in strategic areas throughout the country.
• To publish and distribute a quarterly newsletter, educational booklets, audio-
visual and other educational and supportive materials about PD.
• To sponsor educational conferences for professionals, patients, caregivers, and
families throughout the country.
• To raise public awareness and understanding of PD.

The Cincinnati office of APDA is a nonprofit information and referral center for
PD. The primary purpose of the center is to support and educate by counseling and
providing literature to patients and individuals who are associated with the disease. The
center implements positive coping skills and goals for patients, caregivers, and other
health care personnel; and informs patients and caregivers of the reason and rationale for
their therapies. Services are delivered to customers by telephone, mail, Internet, person-
to-person contact, support group, and chapter work. The center also conducts an annual
symposium, sponsored by area neurologists, hospitals, as well as pharmaceutical
companies, to address hot topics such as new drugs and surgical treatments.
The center employs a medical director, who is a neurologist specializing in PD, a
registered nurse as project coordinator, and an assistant. The assistant herself has PD and
her real-life experience enables her to empathize with customers. The center is affiliated
with a local university, which provides an accountant to help the center with financial
matters. The Center is regulated by the APDA and OSHA regulations. Because it is not a
medical establishment, it is not subject to health department regulations. Operating funds
come from grant money given by APDA and other grant money from pharmaceutical
companies.
The key customers are the Parkinson’s patients, their caregivers, family members,
support groups, and the professionals (neurologists, geriatricians and nursing homes) who
work with these patients. Customers use the center for information and referrals to
improve their response to the disease and overall well-being. The center responds to
every client on an individual basis. APDA is the main supplier of all media materials.
Pharmaceutical companies provide their drug and general information. Surgical
companies and hospital supply companies also provide information on their devices.
An important strategic challenge the center faces is involving community
neurologists and primary care physicians outside the university system as allies in their
efforts. Community neurologists often refer their complicated patients to the university
hospital and its affiliated neurology clinic. However, they do so with reservations. These
reasons include losing their patients to university neurologists, conflicts of interest related
to pharmaceutical-sponsored clinical trials, and a general feeling that academic
neurologists do not treat them with respect.

Discussion Questions

1. On what issues should the center focus in order to build relationships with its
customers and suppliers?
2. Can you suggest specific activities and practices related to customer satisfaction
and loyalty that they might engage in to develop into a total quality organization?