My name is Danny Sands, and I have been a primary care physician for more than 20 years. I serve on the faculty of Harvard Medical School, am on the staff of Beth Israel Deaconess Medical Center, and serve as senior medical informatics director for Cisco. I have observed that a strong partnership between patients and providers yields better outcomes and improved satisfaction for both parties. I’ve found that key components of this are communication, sharing of information (transparency), and mutual respect.
Communication between patients and providers shouldn’t take place only face-to-face in the office, because health activities don’t take place only in the office. We can encourage and lower barriers to communication by permitting more options for communication. Until relatively recently, the only communication channel available besides the personal encounter was the telephone. While this was a useful tool, the nature of phone communication created its own barrier because of time constraints and the difficulty of synchronizing calls. For this reason, I began using email in my practice, and in 1998 I coauthored the first best-practice guide for using e-communication in medical practice.
If we want patients to be engaged in their health care, we must provide them information about their health. When we sequester patients’ medical records, it’s difficult for them to participate in their health. I also helped develop PatientSite, one of the first patient portals that permitted secure communication between patients and their health care team; allowed patients to easily request prescriptions, appointments, and referrals; and allowed patients to see their medical records online. Permitting patients to see their own health information is essential in lowering barriers to patient engagement.
Finally, both the patient and the provider need to listen to and respect the other party. Patients should understand that physicians have a great deal of knowledge and clinical judgment. But physicians must understand that patients are experts in themselves and bring an important perspective to the therapeutic alliance.
My hope is that we can lower barriers to patient engagement, that all patients will view health care as a participatory sport rather than as a spectator sport, and that all physicians will welcome them to do so.
I am sharing my story with Better Medicine because I want all patients, would-be patients, and both professional and nonprofessional caregivers to understand the importance of the principles of participatory medicine.
Early Symptoms of Kidney Cancer
Kidney cancer is interesting because it often can be asymptomatic. However, one patient I took care of was complaining of shoulder pain. A shoulder X-ray revealed minor changes in the shoulder but a mass in the lungs. Further testing showed actually five masses in the lung and masses elsewhere in the body as well. This turned out to be metastatic kidney cancer. In retrospect, the patient may have been a bit depressed, and, although he was still overweight, his weight had decreased slightly. So essentially his only symptom was shoulder pain. Fortunately, he had a terrific response to therapy and did well.
Another patient I care for is a bit of a hypochondriac, despite his alcoholism and deadly smoking habit. In his case, we were evaluating his lungs with a CT scan because of something we saw on an X-ray. The chest CT caught a piece of his kidney, which did not appear normal. We pursued this and found that he had an early kidney cancer. He was treated with a newer form of radiation therapy and also did well.
When patients have a potentially serious illness, it’s important that health care providers try to reassure them, without saying things that are untrue. First, we try to gather as much information as we can, and that usually involves working with specialists. Just having the information and understanding the diagnosis and the extent of disease is important. Next, I explain to them that I will help them through this and will stick with them. I encourage them to research their condition on the web and discuss findings with me, especially if they have questions—“knowledge is power.” They also need support. I encourage them to reach out to friends and family (using a blog, a journal site like CaringBridge, or even an email list) as well as to others who have or have had their condition. For cancer, ACOR.org offers hundreds of cancer-specific support communities.