National Symposium Panel Discussion: Achieving the Vision: The Patient Perspective

The Mayo Clinic Health Policy Center and Health Affairs hosted a national symposium Achieving the Vision: Advancing High-Value Health Care December 5-7, 2010. The third panel discussion focused on the patient perspective in regards to high-value health care policy.

Moderator:
Tim Johnson, MD, ABC News

Panelists:

• Melissa Ortega
• Paul Llanes
• Carol Allred (president of WomenHeart)
• Kathi Hansen (patient advocate for American Cancer Society)

After Dr. Nesse introduced Dr. Tim Johnson and the panelists, the audience reviewed a video of patient perspectives about the American health care system:

After the video, each of the panelists provided their perspective.  Carol stated that patients must become educated about their own health care and rely on their providers’ medical expertise, but said they also have a role to be compliant.  Paul, who has lots of health care experience both as a patient and as a caregiver, feels that those who have a voice need to speak up for those who don’t – particularly for seniors. Melissa’s chronic condition has exposed her to insurance coverage issues as well as uncoordinated care.  She is pleased that the new law provides insurance for so many more people and prevents discrimination against pre-existing conditions. She also hopes that coordinated care and electronic medical records are adopted.  As a cancer survivor, Kathi is very pleased that routine screenings will no longer require co-pays, eliminating barriers to preventive care or early detection.

When posed with the question of how patients can make their voices heard, all of the panelists suggested that some sort of advocacy was necessary.  Carol spoke of the advocacy training that her organization provides to their members.  Paul talked about advocacy in the context of helping people get access to the right resources, encouraging them to ask questions and start talking to people.  Melissa also suggested that patients use their own circles to get the word out and to share information to educate.  Kathi echoed the desire and need for advocacy by saying that people need to speak up, write letters to the editor, attend events, and that personal stories are often the most powerful tools to get messages across.

Another question raised to the panel was how patients can be part of the solution. Carol continued with her theme of being an educated consumer, working with the physician and taking responsibility for one’s own health. Paul brought up the point that insurance does not pay for everything and that more education is needed on cost and necessity of all tests. Melissa made the point that there are many treatments and medicines available, but if resources are limited, who decides who gets the benefit of them?  Kathi wanted to make sure that the discussion didn’t shift to centering on money and that the focus should remain on the patient and the patient’s needs.  All patients have a voice and should be encouraged and supported to share that voice.

Questions from the audience concerned the level of patients’ obligation to be aware of costs, end of life issues and why chronic patients’ compliance wanes over time. Some important points related to these questions included a difference of opinion on patients’ behavior on choosing appropriate levels of care, a call for more effort by the provider community to engage patients in end-of-life discussions and decisions long before those decisions are imminent, and that the patients’ physical reactions to treatment will often dictate their compliance.

The video below is a compilation of thoughts from our panelists.