Advocating for Patients With Chronic Conditions

In an ideal health care world, patient care would be coordinated, and one doctor would serve as the trusted advisor for the patient. The harsh reality of the current system is that doctors are poorly compensated for advising patients, and fewer than half of patients have a long-term relationship with a primary-care physician. To make matters worse, coordination of chronic conditions often requires the input of one or more specialists who may not be connected.

Instead of care coordination, many patients with chronic conditions find themselves visiting several doctors who order various tests, provide differing diagnoses, prescribe their own therapies and have separate follow-up visits. These doctors speak in “doctorese,” and patients may be too weary or too nervous to demand clarity about their diagnosis and treatment options. Patient advocacy has become big business in response.

As a health care business professional, here’s the free patient advocacy I offer to friends and family with chronic conditions:

1. Find a physician who treats a lot of patients with the condition. If the condition has not yet been diagnosed, find a primary-care physician who sees the collection of symptoms as a “puzzle to solve” rather than an unwanted “challenge.”

2. If other physicians need to be consulted in the process, make sure they have access to the information gathered thus far. If physicians are not able to access electronic patient records, bring hard copies of your chart, test results and prescriptions. Yes, it creates some privacy risk, but in my opinion, access to the information outweighs that.

3. Before leaving, make sure to understand what the doctor did (e.g., examination, tests) and said (e.g., recommendations, prescriptions). Listen carefully and take notes. If a picture would help, ask the doctor to draw one. If anything is unclear, ask for an explanation. Here are seven key questions to gets answer to:

• How do patients typically respond to each therapeutic option?

• What side effects are common and can they be mitigated?

• Are there known drug or food interactions?

• How will we know the therapy is working?

• What could go wrong, and if it does, what should we do?

• If this therapy does not work or stops working, what would be next?

• When should we schedule our next visit, and is it based on time or a certain set of circumstances?

4. Within 24 hours of the visit, think about what the doctor said. If there are choices, do you have the information to make an informed choice? If not, what further questions need to be asked? Contact the physician to discuss them.

5. Finally, it’s time to make decisions. Here’s my rule: Doctors recommend, the patient decides and the advocate remains silent. The advocate’s role is to help the patient gather and make sense of the information presented, including the doctors’ recommendations, but you should make the decision that pertains to your body.

I hope this information has been helpful. Please let others know what you think by adding your comments below.

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