PCORI tagged posts

Editors’ Note: With Congress in recess for the 4^th of July holiday, we get a brief reprieve from the Senate’s consideration of the “Better Care Reconciliation Act.” From where we sit, this legislation severely undermines gains that we have made in access to and quality of mental health care.

In the spirit of citizen engagement, we offer an encore post from former Member of Congress Tony Coelho on the need for patients – and we would add families, too – to be involved in policy-making. We hope it will inspire you to share your concerns about the proposed changes to the healthcare system and to tell your elected officials how this bill would impact you and your family’s health and wellbeing.

Have a safe and happy Independence Day!

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Tony Coelho, former Member of Congress, author of the Americans with Disabilities Act, and lifetime disability advocate

Since the age of 16, I’ve suffered from seizures. I’m now 74 and six decades of experience as a patient has taught me a lot about the healthcare system. I’ve seen firsthand how it’s evolved to suit the financial interests of the most powerful players and often ignore the needs of patients.

Unfortunately, many of the decisions that affect patient care are made at the policy level, often by bureaucrats with little or no clinical experience. When decision-makers ignore the patient perspective — including individual exam room experiences — care can become sterile, mechanized, and ineffective.

In order to create a system that better treats patients, we need legislators and decision-makers to create laws and regulations that value and support patient input. By bringing patients to the policymaking table, we can create a stronger healthcare system that addresses the needs of the individual and ensures more effective care for everyone as we move forward.

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A suicide attempt during her junior year in college brought Jennifer back home to live with her parents where she chose to participate in a mood disorder partial hospitalization program (PHP). Her treatment plan included group therapy and peer support services at the PHP and appointments with a psychiatrist. Through this coordinated mental health care, she and her support team accepted a bipolar II disorder diagnosis. Jennifer identified to her care team that her end-goal was to return to the university she had left and graduate.

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