Medidata Patient Advocates Discuss the Importance of Mental Health | Patient Perspectives
World Mental Health Day is observed on October 10th every year, with the overall objective of raising awareness of mental health issues around the world and mobilizing efforts in support of mental health. The day provides an opportunity for all stakeholders working on mental health issues to talk about their work, and what more needs to be done to make mental health care a reality for people worldwide. Members of the Medidata Patient Insights Board (PIB) weighed in on their mental health and how it has been a part of their health journey.
How do you view the intersection between mental health and physical health? And what steps do you take personally to support your mental care?
Patients need support for mental health just as much as they need it for physical health. Many PIB members support their mental health by seeing a therapist, going for runs or walks in the fresh air, taking time to step away from things that cause stress, finding ‘alone time’ to just read or unplug, and talking to family members and loved ones who we can share our emotions with freely.
Mental health and physical health are closely intertwined. When we are not taking care of our mental health, our bodies suffer, too. MarlaJan says, “When my emotional health is not where it should be, the level of my disease activity increases. All stress leads to flares.” This is true for other members as well. Ella states, “I’ve experienced a decline in my lung health when I have been through periods of emotional distress and I’ve ended up in the hospital with a lung infection.”
Sheila has been seeing a therapist for many years after finally realizing she can’t battle everything alone. “She helps me cope with not only my cancer diagnosis but with all the other things that go on in my life. I’ve learned to take care of myself first. I have continually poured into everyone these past 12 years since being diagnosed and it seems no one takes the time or not many people take the time to pour back into. I have also set boundaries and have learned to say ‘no’”. For MarlaJan, intense trauma therapy and Eye Movement Desensitization and Reprocessing (EMDR) has been her saving grace. She also finds solace in slow, deep breathing. Watching reruns of The Office helps, too!
Anne Marie has learned to check in with herself frequently. “If I’m feeling overwhelmed, I’m a big fan of HALT. Am I hungry, angry, lonely, tired? I try to identify the root cause and I have learned to stop and breathe. The simple act of purposeful breathing for just a couple of minutes is helpful.”
As a caregiver, Mindy is constantly pulled in many directions addressing her own needs and the needs of her family member who needs 24/7 help. She has had to accept that she needs additional assistance in providing this care and getting help has improved her mental health beyond measure.
What are some examples of circumstances that have had an effect on your mental health, and how can stakeholders work together to minimize them and reduce patient burden?
The physical burdens of our diseases are just a few aspects of a patient's life that weigh on our mental health—the pain of illness, the fear of getting more sick, the stress of not being able to fulfill other life obligations. Having to rely on family members and friends for support can be challenging, along with the financial strains of illness from mounting insurance costs to potential loss of wages.
Dave explains, “Getting diagnosed with cancer when my kids were young was tough, while not receiving any support from my parents or brothers. Then, having months of pain after a lobectomy, and my dad writing me out of his will were difficult mentally to get through each day. Not to mention the stigma I experienced around lung cancer.”
Anne Marie adds, “When I was diagnosed with and treated for cancer, I was in an unhealthy marriage. That took a big toll on me because the cumulative effect of dealing with a scary diagnosis and an abusive husband made everything look hopeless. It took years of therapy, including doing all of the work that was required of me, for me to find the courage to walk away from the marriage and find my voice in advocacy.”
Sheila also shares the fear regarding her cancer journey. “I think for me, I am always worrying about progression of disease; showing up at each 3 month scan wondering if the cancer is growing. Participating in clinical trials added additional stress with not knowing whether the treatment has worked.” Justus had similar thoughts on the mental stress of a clinical trial, stating, “The prospect of losing care after being in a trial or losing trust in a promising technology because of a trial is a significant mental health burden.”
Phyllisa adds that there are also social burdens on mental health. “Watching the news and living in the midst of the COVID-19 pandemic impacts my mental health. Wondering if I will be able to afford insulin and my diabetes supplies is heavy on my mental health.”
Stakeholders can work towards addressing the daily stress that patients carry. Justus says, “Make sure that the cost of innovations is accessible for as many patients as possible. This includes durable medical equipment research and development.”
How can the pharmaceutical and life sciences industries provide resources to support patients in their mental health journeys? What are the greatest needs the industry can address?
Patients need to be given resources to support their mental health.
As Ella states, “The greatest area of need for support from the industry is providing resources to relieve the burdens of financial, emotional, and physical constraints on patients. This means the industry should serve as a source of information that supports the entire patient journey, not just address the symptoms of their disease.”
Dave adds that it’s vital to “make patients and families aware of support services, advise them that they may need support, and emphasize there is no shame in seeking support. The industry must recognize that needs may change at different parts of patients’ health journeys—beyond diagnosis or initial treatment. Acknowledge the vulnerable time the patient is not being seen or treated.” “This means their place of work, sexual orientation, culture, and values are respected,” adds Justus.
When it comes to clinical trials, the life sciences industry can focus on making them as inclusive and accessible as possible. “The implementation of decentralized trials allows more people to participate while alleviating some of the stress that comes with participation,” says MarlaJan. “Additionally and equally as important as participation in trials is the attention given to minimizing the amount of healthcare cost associated with trials and general patient care. Grants for coverage of procedures could significantly support patients’ mental health and assure diversity of participants within trials”, says Justus.
Providing support through disease communities is another valuable method. In the Duchenne Muscular Dystrophy community, of which Mindy is a part, she has had opportunities to provide input about patient assistance programs that help patients and families with access issues and finding and utilizing home and community-based supports.
Phyllisa sums it up well, “The greatest need is having compassion and understanding on the part of the industry in developing treatments and medications that consider all perspectives of patients' lives.”