The New Informed Patient Teaming with the Physician
There was a time, not that long ago, when a diagnosis and treatment plan given by the doctor was the final say in a patient’s awareness of their disease. No matter how knowledgeable or specialized the doctor, there was no other place to go — other than to another doctor for a second opinion. The advent of the “new patient”— the patient who is directly involved in gathering information about their disease and treatment options, seeking necessary support and participating in decisions about their health care — has arrived! And what’s more, there is general agreement that this new empowerment of patients can and often does make for better collaborative health decisions and outcomes.
The Medical Internet Connection As in many areas of our lives, the age of the Internet has brought about a dramatic change in the patient/physician relationship. A major development for Internet-savvy consumers is the use of the World Wide Web to learn about the latest research and drugs for their disease and garner support from other sufferers around the world on specific support sites.
The most perplexing part of this Internet-related empowerment is the sheer volume of information the patient will most likely encounter while surfing the net. According to a study last year by the Pew Internet & American Life Project, the Web is a regular source of health and medical information for over 50 million Americans — with patients doing more Web surfing than investors or even students! However, the plethora of information they are apt to encounter is at best overwhelming and can sometimes be misleading. Many medical professionals feel you are safer to deal with sites that are run by universities, medical associations and the government.
As positive as the availability of information may be, there are some down sides other than the obvious chance of misinformation. Some patients, to the dismay of the medical community, are opting to use this access to medical information to diagnose themselves. For the best results, health professionals advise strongly that the Internet should only be used to inform — not treat. Some doctors feel the new technology resources available to their patients keep them on their toes, and that an informed patient can be a wonderful ally to the doctor and may indeed mean better medicine all around.
Using Resource Centers Medical institutions are realizing the need for resource centers — medical affiliated facilities that offer a variety of information and sometimes treatment specific to a particular disease. These centers, which are gaining momentum all over the nation, offer the patient the opportunity to easily access reliable information about their illness and treatment options, as well as support for family and patients. Often these centers are patient friendly and comforting — sensitively designed for the patient and family members going through a lifethreatening or anxiety-producing illness.
Although some centers are more sophisticated than others, offering reliable Internet or publication resources, support groups, lectures and classes can be very effective in educating patients and families.
…patients are doing more Web surfing than investors or even students!
A Model Center: Eisenhower Lucy Curci Cancer Center In an ideal world, there would be no cancer. However, the next best thing to ideal would be finding a place committed to supporting cancer patients and their loved ones in every possible way. The Eisenhower Lucy Curci Cancer Center, which opened in February 2004, is a model for such centers in every respect.
Created to not only heal the body, but also comfort the spirit, the center’s motto of a healing place like no othersm aptly applies, from the time the patient enters the embracing 97,000-square-foot facility. Treatment rooms, support services and state-of-the-art medical technology are surrounded by lush gardens, tranquil reflecting pools, and natural sunlight that create vibrant prisms that dance along the walls. It is an experience that illuminates, uplifts and gives hope to all involved.
Alison Mayer Sachs, MSW, OSW-C, Coordinator of Cancer Support Services at the Eisenhower Lucy Curci Cancer Center, has been on board since before the center opened. Sachs received her certification as an Oncology Social Worker in September 2003. She was one of the first social workers in the country to receive this certification. To date, there are only 129 certified oncology social workers in the United States. “I have been a medical social worker for 27 years, but it has just been in the last five to 10 years that I have seen the new patient emerge,” Sachs explains. “More and more we find today’s patient has become an active member of their health care team. Patients have learned that asking their doctor questions and seeking explanations is part of their job as a patient. At resource centers such as ours the information is both reliable and the most upto- date available, which is a gigantic advantage.” Sachs points out that this is not the case at all resource centers. The Eisenhower Lucy Curci Cancer Center’s Resource Center is unique in that CancerCare® touch screen computers are updated monthly with certified information from the National Cancer Institute. The Center was the first in the United States to have a 24- hour direct hotline to American Cancer Society patient information. The Center is also staffed by knowledgeable volunteers and professionals who assist patients, friends and family members in finding the information they seek.
Sachs sees the new patient as taking charge of their own care, which may be a result of the late 1990s patients’ rights movement in the country. She sees the Internet as being a wonderful source, yet also “frightening,” and cautions the user to check three important elements: the source of the information (is it self-serving or from a reliable medical source or authority), references you can trust that back up the information and the date of the information. Sachs warns that any information on cancer given before 2002 may no longer be relevant. “Cancer care is changing so rapidly that any treatment or diagnostic information from more than two years ago could be out of date,” according to Sachs. At resource centers such as the Eisenhower Lucy Curci Cancer Center, the information is both reliable and the most up-to-date available, which is a crucial advantage.
Sachs, who sees centers such as Eisenhower’s as essential to the new, informed patient, feels that beyond support and technology, the patient is really learning how to communicate effectively with his/her entire health care team. Sachs sums it up, “I think, most importantly, we need to become educated about our own medical care so we will be able to participate in the decision-making process of our treatment. To do this, we need to be information seekers. We need to find the most reliable and up-to-date information; we need to know how to communicate effectively with our health care team, and we need to know how to empower ourselves to become an active participant in our own health care.”