Tackling Our Mental Health Crisis by Elevating the Patient’s Voice

By: Melissa Stevens, Executive Director, Center for Strategic Philanthropy

Watch the full panel video from the Future of Health Summit here.

The world is just beginning to come to grips with the enormity and urgency of our global mental health crisis. An October 2018 report by the Lancet Commission on Global Mental Health concluded that “all countries can be thought of as developing countries in the context of mental health.”

The United States is no exception.

  • 1 in 5 Americans suffers from mental illness.
  • About 35 percent of adult Americans with serious mental illness are not receiving mental health treatment.
  • 70 percent of youth in U.S. juvenile justice systems have at least one mental health condition and at least 20 percent live with a serious mental illness.
  • Serious mental illness costs America $193.2 billion in lost earnings per year.
  • Heartbreakingly, each day an estimated 18–22 veterans in the U.S. die by suicide.

With this somber reality as a backdrop, the Milken Institute Center for Strategic Philanthropy (CSP) in partnership the Depression and Bipolar Support Alliance (DBSA) set out to determine a collective way forward by asking the very people who are the most expert — those living with mental illness. Together, we released the “Supporting Wellness” survey earlier this year to people living with depression and bipolar. This survey was formed to better understand individual experiences of depression and bipolar across the lifespan. Participants were asked about the impact these conditions had on respondents’ lives, how they personally define wellness, and what research they think should be prioritized.

We have been absolutely thrilled with the response. To date, we have received over 6,250 responses from individuals with depression or bipolar and their loved-ones. This data is being directly incorporated into the Well Beyond Blue, a multi-year campaign managed by DBSA that includes a first-of-its-kind Patient Focused Drug Development meeting that is taking place today (November 16, 2018) and brings together FDA officials with people living with depression to collectively explore new treatment options.

What did we discover?

To move the conversation forward, I summarized some of the key findings from the survey late last month during a panel discussion that featured speakers from the National Institute of Mental Health, the Born This Way Foundation, RWJBarnabas Health, the Milken Institute Center for the Future of Aging, and the National Institute of Justice at the Milken Institute Future of Health Summit.

For example, we found that more than two-thirds of survey respondents indicated their symptoms started before the age of 18. In response, Cynthia Germanotta, co-founder of the Born This Way Foundation alongside her daughter Lady Gaga, reflected on how youth will ultimately be at the center of the solution to the global mental health crisis and that we must empower them to build a kinder, braver world.

We also found that respondents came from all age groups, and more than three-quarters of respondents indicated that depression or bipolar had a significant impact on their lives. Nora Super of the Center for the Future of Aging noted that no matter the stage of life, stigma around mental illness should be eliminated and highlighted the importance of loneliness as a risk factor for elderly populations.

Where do we go from here?

One of the tenets of the Milken Institute is putting the patient at the center of health and research conversations and solution development. By bringing lived experience into the equation, we hope to support ongoing efforts to redefine research priorities and treatment development for a variety of mental health conditions. Ultimately, these voices will guide therapeutics and reconfigure well-being goals. Our survey demonstrates that individuals living with depression and bipolar are savvy about treatment gaps and what research needs to be done. We are confident that their input will bring us all closer to where we need to be to substantially tackle our mental health crisis in the US and around the world.

A full report on our survey findings will be published in early 2019. You can learn more about our preliminary findings from the patient-input mental health survey on STAT News.

To learn more about the Center for Strategic Philanthropy, visit our website here.