Several years ago, while my husband was in the hospital, I was concerned about the course of his treatment and couldn’t seem to get a clear picture of the next steps and prognosis. Not sure where to turn, I called his primary care physician (PCP) for guidance.

Officially, there was a hospitalist in charge of my husband’s care, but his answers to my questions were vague and inconclusive. I hoped that the PCP, who knew my husband well, could help me understand what was going on and guide me through some decision-making I thought might be on the horizon.

But the PCP was out of the loop—uninformed about his patient’s condition and just as unhappy as I was about the uncertainty of the situation.

“Who’s in charge of the case?” he asked a bit gruffly. I paused for just a moment, took a deep breath and answered. “I am. I’m the one who talks to all the doctors and connects all the dots. I guess that makes me the case manager. “

Such is the sad state of modern medical care. Being case manager is not a role I had planned to assume. But over the years, I have been the dot-connector many times as my husband cycled in and out of the hospital for a number of life-threatening illnesses. One of the things I have learned as his advocate-in-chief is that medicine is fragmented; even in the hospital doctors do not necessarily communicate with one another beyond leaving cryptic notes in electronic health records. And PCPs, who are responsible for follow-up care when the patient goes home, are often left in the dark.

Coordination of care is a serious issue outside the hospital, too. A recent Harris poll showed that 70 percent of seniors rely on family or have no one to help them coordinate their health care needs. And in the months immediately following hospitalization, 63 percent reported that no one helped them coordinate their care.

Seniors aren’t the only ones who experience issues around care coordination. But they are often affected by it more adversely; with multiple medical problems, medications and doctors, they are also less likely to be able to manage their own care. They also have more hospitalizations. Of the 35 million hospital admissions every year, seniors account for approximately 40 percent.

The findings are both troubling and alarming. By one estimate inadequate care coordination costs between $25 – $45 billion annually. And that doesn’t take into account the toll on the patient in terms of pain, suffering, prolonged illness, repeat hospitalization and more.

Being sick is bad enough. Patients and their families trying to cope with the medical bureaucracy often feel like tourists lost in a strange land where they don’t know the language, the culture or the customs. So what’s a patient or family to do?

While it may feel burdensome or overwhelming, you can make a big difference in someone’s well-being—your own or a loved one’s—if you become involved in the coordination of care. Some steps are simple; others require a certain amount of planning, management skill and perseverance. Here are a few tips to help you get started:

  1. Keep track of all medications and make sure the patient’s doctors have the same list. You can keep a paper copy in your wallet, use an app on your smart phone or use a medical ID bracelet with a USB drive to store the information.
  2. Make a similar list of all major health events and procedures for the patient and the dates they occurred. A hospital admission or other health care crisis is no time to trust your memory, especially if there are multiple incidents to remember.
  3. Keep your PCP informed of visits to specialists and the outcomes of any tests or procedures. You can ask that results be transmitted directly to your PCP or request copies that you can deliver personally. Either way, it’s an important part of connecting the dots.
  4. Take steps to ensure that all doctors involved in a hospital patient’s care are in sync with one another. Ask doctors if they are consulting with other specialists on the case. Leave messages at their offices as reminders. Request a meeting of all concerned if necessary. Talk to the nurses; they can be your strongest allies.
  5. Make sure discharge instructions are clear before leaving the hospital. Take special note of any medication changes. Are they in addition to or instead of ones taken before hospitalization? Ask about follow-up appointments and restrictions involving diet or activities. Misunderstandings surrounding discharge plans are one of the common causes of readmission—something no one wants to see happen.
  6. Ask for a copy of the patient’s file before leaving the hospital. Some hospitals provide summaries as part of the discharge plan. Others charge for copies, and there may be a delay in receiving them. Either way, put your hands on as much information as you can; it will be valuable for the patient’s routine care and the doctors who provide it.
  7. Follow up with the PCP as soon after discharge as possible. Make sure he or she has all the information you can provide including the hospital file, test results, even your own notes. You will be amazed how much the doctors will appreciate being brought into the loop.

We all can hope that coordination of medical care will improve over time. But until that happens, we can play a part protecting ourselves and those we love. You never know when the steps you take can save a life—maybe even your own.