It’s no secret that it’s a lot of work to be sick. Being diagnosed with a serious illness can open the door to scheduling extra doctor’s appointments, researching medical options, taking medications, investigating insurance benefits, and even changing what you eat and drink.
In our research project, we found that there is also another type of work involved in living with chronic illness. People managing their health also need to manage their medical records. This means doing things like transferring information from doctor to doctor, tracking information about treatments and hospitalizations, and correcting mistakes in records. We called this type of work “invisible” because although it takes a lot of time and effort and is an important step in getting good medical care, for the most part, even patients’ own doctors and nurses may not be aware of the work that patients must put into these tasks.
We interviewed 22 people in New York City, each of whom had at least 2 chronic illnesses (including diabetes, chronic pain, depression, HIV, hepatitis C, and a wide range of other conditions). Because of the complexity of their medical conditions, these people saw an average of 5 different doctors.
These interviews showed that transferring patient information from organization to organization was extremely important. One man told us that his surgery had to be canceled because laboratory test results from his primary care doctor didn’t get delivered to the surgeon on time. Another told us that one of her medications was discontinued because the insurance company said the physician had provided insufficient information about her condition.
But what to do to prevent these problems in current systems was somewhat less clear.
We found that people had different approaches to the challenge of getting their information moving across institutional boundaries. Some patients (especially those who had had bad experiences in the past) took a very active role in obtaining copies of their records, test results, and other information, and sharing it with all their doctors. Other patients said that they expected the healthcare system to take care of this task for them. “They’re supposed to have all the information. They’re supposed to look it up,” said one person.
When patients took the lead in transferring their own medical records, we found that they approached the problem creatively, using a variety of solutions. Some of them memorized key pieces of information. Some of them kept an electronic spreadsheet that they updated every time they saw their doctor. Others tracked key information (like their medication list) through handwritten notes. However, one problem we discovered was that when patients track data about their health, physicians might not really trust that patient-collected data. Doctors we interviewed in our study said they were more likely to trust information provided directly by a doctor or by an electronic tracking device such as a blood pressure monitor.
Another issue we discovered was that patients were making judgments about what information to share, and those judgments were not always the same as what the doctors wanted. For example, patients didn’t bother sharing information that they thought was irrelevant (such as one woman who thought that the treatment she received from her dermatologist was unlikely to be of interest to her primary care doctor). Patients also didn’t bother sharing information if they thought the doctors were already in contact with each other (such as several patients who believed – mistakenly – that doctors at 2 different institutions could see each other’s electronic medical records). Occasionally, we encountered a patient who had privacy concerns about sharing information, but this was not very common among the people we interviewed.
Finally, we found that patients were putting in a tremendous amount of time and effort getting information transferred from one setting to another or correcting mistakes in their records. For example, one man used an electronic account to log into his own medical record and found a mistake. When he tried to correct that information, he was referred from a technical support phone line to a doctor’s front desk staff back to a technical support email address without being able to get the problem fixed. Another one received a home medical device without any instructions for use, and contacted the manufacturer, the insurance company, and 2 different doctors’ offices without success. Several people had lengthy stories about coping with insurance company denials of coverage or other problems.
After these interviews, it is clear that this burden of information management is an additional problem for people with chronic disease to deal with. In our paper, The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers, we called this a “systematically regressive tax on illness.”
We think that there’s a role for information technology to help reduce this burden. One solution could be health information exchange technology, which is designed for health care professionals to exchange patient records. Another could be the personal health record, which is designed for patients to keep and manage their own medical information. The first can be thought of as a doctor-focused solution, the second is a patient-focused solution. We think both will be needed in the future so that sharing information is easy and seamless, so that physicians can have confidence in patients’ information, and so that patients who want to do so can take an active role in managing and checking their own data. It will be important to make sure that these kinds of systems are designed for the ways that patients and health care professionals want to manage this kind of information. By designing systems that truly work for the people who will use them, we can reduce the additional burden of invisible work that goes along with living with chronic disease.
Jessica Ancker is an Associate Professor of Healthcare Policy and Research, Healthcare Policy and Research, Weill Cornell Medical College. Jessica’s research focuses on the use of health IT by patients and providers, effects on comprehension and decisions, and effects on healthcare quality.
Holly Witteman is an Assistant Professor, Tenure Stream, Department of Family and Emergency Medicine; Office of Education and Continuing Professional Development, Faculty of Medicine, Université Laval, Quebec City, Quebec, Canada. Holly specializes in the study of interactive media for health communication and decision making, focusing on contexts that require communicating numerical data, interpreting risk information, and trading off risks and benefits.