When patients are facing cancer treatment they are usually frightened and feeling vulnerable. However, it is vital to keep in mind that you are a consumer purchasing a very expensive service. If you have cancer, your life may depend on the choices you make, so you should be more careful than you would be in buying a house or a car.
Some hospitals are much better than others in terms of preventing errors, injuries, accidents, and infections. Hospital safety is not a trivial issue: a study reported in the Journal of Patient Safety says that as many as 440,000 patients each year who go to the hospital for care suffer some type of preventable harm that contributes to their death. That would make medical errors the third-leading cause of death in the United States, behind heart disease and cancer. Fortunately, you can check out the safety records of hospitals because they are required to report data to the states and the federal government. The Leapfrog Group, an independent healthcare industry watchdog, takes national performance data from the Agency for Healthcare Research and Quality (AHRQ), the Centers for Disease Control and Prevention (CDC), the Centers for Medicare and Medicaid Services (CMS), the American Hospital Association’s Annual Survey, and their own Leapfrog Hospital Survey. It analyzes the data and grades hospitals from A to F based on their ability to prevent errors, accidents, injuries and infections. The Hospital Safety Score is the gold standard rating for patient safety, compiled under the guidance of the nation’s leading patient safety experts, and you can access it on the website. You can use it to check up on your hospital, or you can use it to find a hospital with a good safety record.
While patient safety has to do with lack of harm, quality is a different issue. Quality has to do with how efficient and effective the care is, and some hospitals are better at some procedures than at others. In your case, you want to know how good they are at cancer care. One resource is The Commission on Cancer (CoC), a program of the American College of Surgeons. It approves hospitals or facilities that have committed to providing the best in cancer diagnosis and treatment. Its list of accredited programs includes more than 1,500 cancer centers across the United States. It maintains a database of outcomes from these cancer centers, and the data are used to explore trends in cancer care, to create regional and state benchmarks for participating hospitals, and to serve as the basis for quality improvement. CoC-accredited programs can be found in every state, and you can use the Hospital Locator tool on its website to find the programs closest to you.
The National Cancer Institute (NCI) designates some centers that they consider to be at the forefront of cutting edge treatments. There are currently 68 NCI-Designated Cancer Centers, located in 35 states and the District of Columbia. You can find a list of them on the NCI website.
While you can compare hospitals for accreditation and designation, unfortunately you can’t compare them according to their outcomes, including complications and deaths. Data revealing which hospitals have the best outcomes for particular cancer procedures are not made available to patients. The Cleveland Clinic is the only one I am aware of that makes its detailed outcomes data available to the public, on its website. However, your doctor may be able to access this information on your behalf.
Another way of evaluating hospitals is by using the National Comprehensive Cancer Network (NCCN) guidelines. NCCN, a nonprofit alliance of 26 of the leading cancer centers, has developed clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers. The NCCN Clinical Practice Guidelines in Oncology are decision tools that explain the disease and determine the best way to treat a patient, depending on the diagnosis, disease stage, and other factors, such as age. There are currently 60 NCCN Guidelines available free of charge on NCCN.org, covering cancer detection, prevention and risk reduction, work-up and diagnosis, treatment, and supportive care issues. High rates of compliance with the NCCN guidelines are correlated with better patient outcomes. The NCCN collects data showing how well its members adhere to each of the guidelines, but unfortunately it will not release the information on specific centers, so the public has no way of knowing. However, you can ask your hospital whether it is following NCCN guidelines. You can also ask your doctor to find out for you whether your local hospitals adhere to NCCN guidelines.
In addition to safety ratings, accreditation or designation, and NCCN guidelines, there are other considerations in choosing a hospital. You should check to make sure that your insurance pays for that hospital, and you will probably prefer a hospital that is conveniently located. One thing that was especially important for me was recommendations from other patients. I found that it was well worth my time to ask around and find as much as I could about other patients’ experience at different hospitals.
Even more important than choosing the right hospital, however, is choosing the right doctors. Unfortunately, you can’t assume that good hospitals have good doctors. All hospitals have both good and bad doctors, so you will need to check them out yourself. You may have to choose up to four doctors for breast cancer: a surgical oncologist to do the surgery; a plastic surgeon if you have reconstruction; a medical oncologist if you have chemotherapy; and a radiation oncologist if you have radiotherapy.
You should compile a list of doctors to screen. You can get recommendations from health care professionals, from other patients, from family and friends, from cancer centers, and from scientific journal articles. Rule out any who don’t accept your health insurance. Find out at which hospital the doctor has admitting privileges, and make sure it’s one with a good safety rating and the accreditation or designation you want. Find out whether it follows the NCCN guidelines. Next, consider whether you and the doctor are compatible: Does she listen to you respectfully? Does she fully answer your questions? Does she explain your diagnosis and treatment? An issue that I would not have considered at first, but which turned out to be vitally important, was the doctor’s use of technology. I found it very difficult to communicate with doctors who would not use email or who would not check it regularly and respond promptly. Some doctors have a patient portal, a secured website that gives you 24-hour access to your health records, appointments, lab results, prescription refills, and e-mail questions. Cancer treatment is very stressful, and having easy access to your doctor will reduce your stress.
You should also check for board certification and look for red flags. You can check for board certification through the American Board of Medical Specialties (ABMS) website. Red flags include malpractice claims and disciplinary actions. The National Practitioner Databank provides a thorough background check, including information on sanctions by state licensing authorities, malpractice awards, and hospital disciplinary actions. Common reasons for being disciplined include substance abuse and inappropriate sexual behavior as well as negligent medical errors. However, most states let doctors practice while they are on probation. Unfortunately, the National Practitioner Databank is not available to the public; it can only be accessed by doctors, hospitals, managed care organizations, and government agencies.(ProPublica’s Surgeon Scorecard makes public the complication rates for nearly 17,000 surgeons nationwide, but as of this writing none of them are breast surgeons. I contacted them to ask whether they will be expanding to include breast surgeons, but they told me that they don’t know yet.) Consumer Reports is trying to change this through their Safe Patient Project. They believe that it’s too difficult for patients to find their doctors’ disciplinary records, and that doctors who are on probation should be required to disclose their status to patients. Consumer Reports petitioned the California medical board to make the change, but the medical board rejected the idea. However, there are some doctors who believe in transparency: The National Physicians Alliance, an organization of doctors committed to social justice and healthcare reform, is in favor of making the disciplinary reporting system less secretive and more useful to consumers. Meanwhile, perhaps you know a doctor who will access the database on your behalf; if not, patient advocates recommend that you do your own investigation.
A good place to start is docinfo.org, a website run by the Federation of State Medical Boards (FSMB). FSMB represents the 70 state medical and osteopathic regulatory boards within the United States, its territories and the District of Columbia. You enter the name of the physician you want to check, and the website will tell you the doctor’s education, license, and whether there are actions against him. If there are actions, there will be a link to the state board involved, and you have to click on the link in order to find any information about the actions. However, each state varies on what information it makes available to the public, how often it’s updated, and how doctors are disciplined. Some states provide details on disciplinary actions or malpractice awards and some don’t. Consumer Reports Safe Patient Project and the Informed Patient Institute analyzed the websites of 65 state regulatory boards and ranked them on the completeness of their information and ease of use.
Another source of information is the federal government’s new Physician Compare site, which lists physicians enrolled in Medicare by zip code. It has data on how physicians stack up against specific quality measures requested by Medicare. You do not have to be eligible for Medicare to use this service.
You can check patient online reviews. Experts say there are some 40 to 50 websites that rate doctors based on patient reviews. WebMD provides information on its website about Healthgrades.com, RateMDs.com and Vitals. com. All three provide patient ratings of doctors, but only Vitals.com let me read the patients’ comments that explained the ratings, which I found very helpful. Use of patient reviews is controversial, and some physicians require patients to sign agreements stating that they won’t share their experiences online. I always use these sites. I also use Yelp.com, and my experience has been excellent, often even better than recommendations from friends and family. However, Yelp has no information about disciplinary actions, and it is not clear whether the others do, either.
In addition, you should ask the doctor how many times he or she has performed the procedure you will be having; this is especially important for procedures that are new or rarely used. You want to be sure your doctor has enough experience to deal with any complications. Ask for references. Doctors should maintain a roster of satisfied patients who are willing to talk about their experience. Follow up with them.