Basic science, clinical data, and the personal desires of the patient

Despite spending $150B a year on cancer diagnosis and treatment in the United States, the statistics are bleak: 85% of lung cancer patients die within a year and 15% of new cancer diagnoses are incorrect.

In trying to learn where cancer care might be improved, the #CISummit audience listened closely to the immense wisdom of Amy Berman, who courageously shared learnings from her own personal journey with cancer.

For Amy, what has been difficult yet most meaningful in her own struggle, has not been navigating clinical trials data but has been working with physicians to define and articulate her own goals.

In laying out a roadmap on how to put patients at the center of care, she made the following recommendation: “I would say that I’m very hopeful that people want to do the right thing, but right now the infrastructure is not supportive of the right thing. For example if we go back to the EMR, there is no standard way to capture what that patient’s goal is. There is a growing movement for Physican Orders for Life Sustaining Treatment (POLST) but its not incorporated into EMR. You need to know not just the diagnosis but the course of disease, choices around treatment, and the impact of that choice is on you and your quality of life. Its a partnership between the doctor and patient but ultimately is the patient’s health at stake and the patient has an important role to play here.”

As she boldy concluded: “There are no wrong choices only informed choices”.

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