At some point in our lives, most of us will face an illness where we have to deal with many different health care professionals—often spread out in different locations and settings across the health care system. Our primary physician may refer us to a specialist, or we may have an emergency that sends us to the ER and later requires that we be admitted to the hospital or see our primary physician for follow-up. We may even have to move from the hospital to a rehabilitation or long-term care facility.

Moving from one health care professional or setting to another—called care transitions—usually happens when a person’s condition and care needs change. A successful transition involves communicating and sharing all of the patient’s important health information including the diagnosis, symptoms, other health conditions, test results, treatment plans, medications, allergies, and even patient preferences. Unfortunately, much of this information is often confusing, missing, and even contradictory.

This poor communication can make transitions overwhelming and even dangerous for the patient—especially for older patients who often have more than one chronic disease and may be dealing with Alzheimer’s disease or other dementias. Because of the multiple chronic diseases, older adults are more likely to see many different specialists, spend time in-and-out of hospitals, and transition to and from long-term care facilities and hospitals.

Policymakers and patient advocates recognize that our health care system is poorly equipped to share patient information and are fighting for changes to the system. They are even bringing the issue to the national debate on health care reform. However, changes are still a long way off.

In the meantime, it often falls to the patient and their caregivers to actively participate in transitions and make sure that all important information is communicated. A number of the tools and resources that are available to help make this responsibility a little bit easier are highlighted below.

Failure to Share Information Puts Patients at Risk

Most health care professionals only practice in one setting and rarely follow a patient from one setting to another. This means that information must be passed-on in order to make sure that the patient gets the best care possible. However, the reality is that care transitions are often rushed, responsibility for sharing information is typically unclear and divided, and there is usually little communication between settings.

This failure to share information can make transitions overwhelming and even scary. Health care professionals who don’t seem to know anything about their condition or have the right information can make patients distrust the system, and not surprisingly, cause them to put-off other care. It can also make treatment experiences frightening and result in overall frustration with the health care system.

Communication failures can also threaten patient safety and lead to poor treatment outcomes as well as unintended side effects and complications. A patient may receive unnecessary or inappropriate care. If instructions aren’t shared, a patient may be given the wrong medication which can lead to allergic reactions or interactions with other medications. Poor communication can also lead to delays in diagnosis and care as health care professionals look for answers to questions that have already been answered. In the end, it can significantly jeopardize patient safety and even lead to death.

Resources that Encourage Information Sharing

Too big a burden is placed on patients and families to provide information and initiate follow-up care. This can be especially intimidating when they may not understand the complexities of their condition or of the health care system. Groups like the National Transitions of Care Coalition (NTOCC) are working to fill some of the gaps that occur when patients leave one care setting and move to another. In addition to bringing experts together to work on fixing the system, they also provide a number of resources that are aimed at empowering and equipping patients and caregivers to understand and improve their transitions.

The Alliance for Aging Research also provides tools and resources that help improve physician-patient communication and information sharing, including the recently-released Living with Alzheimer’s: A Personal Health Organizer. This binder is designed to help Alzheimer’s disease patients and their caregivers keep track of the overwhelming amounts of information that go with the territory of an Alzheimer’s disease diagnosis. It includes worksheets and tools that help keep track of health care appointments, medications, treatments, health records, family and personal health histories, and even important legal documents.

The binder also makes it easy to stay organized by providing tabs and folders that arrange the information in an easy-to-access system. By using the binder, patients and caregivers have important health information at their fingertips so they can easily fill in any communication gaps that they encounter along the way. They become the managers of their care transitions so that they can make sure that all of the health care professionals they deal with are fully informed.

This binder is especially important considering the unique challenges that Alzheimer’s patients face in their care transitions. It’s also an important model for additional resources that will help patients facing other diseases and illnesses. To learn more about the binder and to get information on ordering your copy, visit the Alliance on-line or call 202-293-2856.