Just last month, we announced the coming together of our first-ever, patient-only Team of Advisors – a group of 14 PatientsLikeMe members that will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.
So where did we find our 2014 team? We posted an open call for applications in the forums, and were blown away by the response! The team includes veterans, nurses, social workers, academics and advocates; all living with different conditions. Over the coming months, we’d like to introduce you to each and every one of them in a new blog series: Getting to know our 2014 Team of Advisors. First up, Dana.
About Dana (aka roulette67)
Dana is a poet and screenplay writer living in New Jersey. She is very active in the Mental Health and Behavior forum. She is open to discussing the ups and downs of living with bipolar II and helping others through their journey. She has been through weight loss surgery three times and is very interested in the connectivity of diet to mental health—she believes that psychiatrist’s need to be aware of the whole person, and have an understanding about diet, physical health and mental health, not just focus on medication.
Dana is passionate about fighting the stigma of mental illness, which causes people to self-medicate. She believes there needs to be more positive examples on television. Here’s a fun fact about Dana: she won the people’s choice (top voted by peers) award in the PatientsLikeMe video contest for her video, I am not alone.
Dana on being part of the Team of Advisors
It’s really quite an honor, considering the amount of people on the site. I’ve discovered what a wonderful group the advisor’s are and have had some meaningful conversations with a few of them online. I appreciate the opportunity in helping others in anyway I can to understand what we go thru on a daily basis. By getting a glimpse into the life of someone with an illness, I feel that I am educating them and helping them understand a person they might love or know or have dealings with in their own lives. And hopefully open their eyes a bit.
Dana’s view on patient centeredness
Like those commercials for the Cancer Institute, where there are more than one doctor or professional to treat the whole patient instead of just the symptoms of one illness. Many times when you are mentally ill, it seems your body also suffers in physical ways, your diet also becomes poor. Patient-centered to me means that the doctor should look at your diet, your physical and your mental health. Just asking if you are taking your meds is not enough. Psychiatrist seem like pill dispensers and then dismiss you from their office and therapists talk, but really have no interest in the meds. More of a team effort is needed.
Dana’s contribution to researchers at the University of Maryland
PatientsLikeMe recently invited the University of Maryland (UMD) to our Cambridge office for a three day consortium that kicked off a partnership funded by their PATIENTS program, which aims to collect patient input and feedback on all phases of research, from ideas to published results. As one of the working sessions we invited Dana to join us remotely, to discuss her journey with bipolar II and share her perspective and expertise as a patient. Here’s what she experienced:
I was a little nervous at first, hoping I was able to answer their questions and provide them with what they needed to know. The questions were pretty specific at times and I found that to be interesting. Because it showed me that they really wanted to know and understand my views. I enjoyed the experience and hope that my interview helped them in some way.
I was very honest. Explained what it is like to suddenly become bipolar when you had no reference point in your life to prepare you for the physical and mental storm it brings. I stressed how it’s a 24/7 – 365 a day battle, even when the meds are working. At least in my experience it has been. I feel this was an important point to make and that they should consider this when dealing with participants in their research.
I would tell researchers moving forward to always remember the patient is more than a test subject. That what you are researching addresses them on a daily basis and some days, the best they can do is just get out of bed. That some type of break should be considered and might even work to their advantage.
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