Over the past several weeks, CFYM has exposed the problem of postpartum depression and offered solutions for improving the quality of maternal mental health care. This series, developed in collaboration with the National Network of Depression Centers, brought together the voices of women with lived experience, researchers, providers, advocates, and legislators to shine a light on maternal mental health—a topic usually hidden in the shadows.
In addition to exposing some startling facts around the lack of maternal mental health care, contributors also provided meaningful solutions that are effective both economically and from a wellness perspective. These programs provide training and expert consultation to health care providers and peer-to-peer support to assist moms and their families.
One key takeaway from the series is an invitation to participate in legislative advocacy. This included a call to action to support national legislation sponsored by Rep. Katherine Clark (D-MA). All of us can (and are encouraged to!) participate in legislative advocacy— a long-standing tradition that provides a variety of tools for us to make our voices heard to our elected officials:
- In-person office visits
- Community-sponsored rallies
- E-mails, phone calls, and petitions
However, just as important, if not more so, is self-advocacy. Susan Campbell, Jamie Belsito, Amanda Martin and Joy Burkhard are excellent role models. Each shared her personal journey and demonstrated that being her own self-advocate was necessary to receive the care and support she needed.
From self-advocacy to patient-centered care
Speaking up for your own needs is the driving force behind patient-centered care. As a September 2015 CFYM post describes, patient-centered care is “health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and solicit patients’ input on the education and support they need to make decisions and participate in their own care.”
But today many mental health policy decisions that affect when, where and how people receive treatment are not made by providers, nor by our elected officials. Rather these decisions are made by the executive branch of government that has governance over a myriad of national, state and local agencies. Examples include the Centers for Medicare and Medicaid Services (CMS) the Food and Drug Administration (FDA) and state and local mental health boards. Each of these agencies in their own way has the authority to make decisions that promote patient-centered care.
Elevating the collective voice to this branch of government to educate about patient-centered treatment outcomes requires a different type of advocacy – one that demands a seat at the table when mental health policy decisions are discussed and decided.
Recently Allen Doederlein, president, Depression and Bipolar Support Alliance (DBSA) had the opportunity to do just that. Because the Federal Drug Administration (FDA) recognizes DBSA as a voice for individuals living with mood disorders, Mr. Doederlein was asked to provide testimony at an FDA hearing that was examining the role of cognitive dysfunction in people who experience Major Depressive Disorder (MDD). CFYM contributor Ken Dolan-Del Vecchio also provided testimony representing the employer perspective.
As their testimony demonstrates, this very real symptom of the disorder has a dramatic effect on the quality of life for people who experience these symptoms. For example Mr. Dolan-Del Vecchio provided a real-world example of a customer service representative that while experiencing symptoms might not remember what the customer is asking and may struggle to find the information needed. These symptoms have the potential to lead to poor job performance and a less than satisfactory job review —ultimately resulting in the loss of a job for that individual.
Mr. Doederlein got to the heart of patient-centered care advocacy by articulating that “cognitive dysfunction is especially concerning to the extent that it is not specifically addressed by many clinicians or understood as an aspect of depression by the individuals experiencing this symptom.” Further, Mr. Doederlein expressed that the end-goal of MDD treatment should be wellness.
Unfortunately within some regulatory agencies the bar for wellness is set low which can result in an inadvertent disincentive for innovative treatment research. Conversely, because of input from DBSA, the scientific, provider, patient and employer community, the FDA advisory committee evaluating the data, at this recent hearing recognized cognitive dysfunction in MDD as an appropriate drug development end point target. If accepted by the FDA, this recommendation raises the bar, however slightly, to stimulate an environment for innovation and research.
Make your voice heard
We are making progress. We are being invited to the table. More medical institutions and research organizations are asking the right questions. But if we want to see true patient-centered care, we can’t sit back and wait to be asked. We need to be willing to step up and be a voice. Here are a few suggestions:
- Participate in research programs sponsored by the Patient-Centered Outcomes Research Institute (PCORI).
- Contact large research hospitals in your area. Ask them if they are aware of any survey or research projects that are examining patient-centered topics. If not, ask them to put you on a contact list for future projects.
- Be your own advocate. Share your vision of wellness with your providers and ask them to work with you to achieve your personal outcomes. Your self-advocacy could educate them and lead them to pro-actively initiate conversations with their patients.
- Seek opportunities to inform and educate regulatory agencies on your definition of wellness by submitting comments or testifying in person at hearings.
- What were your takeaway messages from the maternal mental health series?
- In what ways does your mental health care reflect patient-centeredness?
- What would you tell your provider if you were trying to make your mental health care more patient-centered?
- How have you made your voice heard at regulatory agencies that are making policy decisions about when, where and how you receive treatment?