Ready to meet another empowered patient who's a 2017 DiabetesMine Patient Voices Contest winner?
Please say hello to Mandy Jones in Los Angeles, CA, who as a winner will be joining us for our annual DiabetesMine Innovation Summit in mid-November.
Mandy is a familiar face in the Diabetes Online Community (DOC) given her recent position as the director of advocacy for the Diabetes Hands Foundation -- which sadly shut its doors earlier this year. Fortunately, Mandy continues her own advocacy both personally and professionally, and today we're excited to share an interview delving into her story and what she has on tap these days.
Q&A with Diabetes Advocate Mandy Jones
DM) OK Mandy, first hit us with your diagnosis story please...
MJ) I was a senior at U.C. Berkeley when I was diagnosed, about five years ago. Surprisingly, my first reaction was relief — I finally had an answer to why I had been feeling lethargic, sluggish, and not myself. After the first six months, I understood the basic science, but mentally things began to intensify. As a young adult, I was now living in San Francisco working my first (remote) full-time job. I didn’t have a strong familial support network close by, and only a few scattered college friends remained in the area. For the first time in my life, I felt alone. I had always prided myself on being an adventurer, a solo feminist who could tackle any challenge by herself. But now, even a bike ride across town was scary and made me re-evaluate how close I’d be to death with the wrong calculation of insulin.
Whoa, and did you find support?
I dove into diabetes meet-ups and support groups, but while my peers remembered teenage annoyance of their parents’ anxiety, my journey was completely different -- burdened with all of my own anxiety from figuring out everything on my own. Between phone calls to insurance companies, visits to poorly-trained doctors, and an internal rollercoaster of emotions, no one seemed to understand my journey or have good answers for me. Everyone kept asking “how are your numbers? What’s that device your using?” But the medical, logistical and mathematical questions seemed to miss 95% of life with diabetes.
healthcare system was guided by the wrong signposts, inefficient where
it was working, and its impersonality normalized. Those emotionally and
mentally challenging experiences my first few years ignited my passion
for improving the healthcare space and drove me to where I am today. I
now view my diagnosis as one of the best things that ever happened to
me. I learned how to tune in to my body, have a greater awareness of
myself, meet fantastic people in the diabetes community, change to a
career I am extremely passionate about, and understand greater depths of
myself and the world.
So you began to work in diabetes professionally?
Yes, I worked as the Director of Advocacy for the non-profit Diabetes Hands Foundation (DHF), from February 2016 to May 2017. I helped them create a strategy to re-build the Diabetes Advocates program. I wore many hats in that role -- helping with landscape research, program design, grant preparation, building partnerships, website development, and project management. For me, the most exciting part of that work was having a vision for MasterLab Leadership Institute and turning it into reality. People with diabetes are inherently the "experts" on the daily challenges that members of their community face -- whether related to education, access, or support -- and are best-suited to be grassroots leaders, implementing solutions that are in-tune with needs. We had a really special, awesome weekend.
And what do you do for a living now?
As a strategic consultant, I now work with organizations in the healthcare, diabetes, and patient advocacy space, helping them design and launch programs that improve the healthcare experience -- from the patient perspective.
I am helping PatientWidsom understand the landscape of online health
communities, identify strategic non-profit partnerships, and pilot new
product delivery. Have you ever been to a doctor's appointment where you
felt like an A1C statistic, rather than a human allowed to ask
questions and make decisions about your own care? PatientWisdom has
designed a digital platform that focuses on what matters to patients as
people, recognizing that we are experts on our own life. After sharing
stories about yourself, your health, and your care, PatientWisdom shares
what's important with your healthcare team to make the most of the
visit. PatientWisdom turns the "soft stuff" into actionable insights for
healthcare providers, to understand what we patients want and
What did you learn about advocacy during your time with DHF?
Whew, quite a lot, but I'll try to package it up...
The challenge with learning more is that with every realization comes an ever-growing conceptualization of how much we don't know... "The more you know, the more you realize you don't know" syndrome. As I've started to peel back the layers of healthcare, I've come to recognize it as its own industrial complex with historical forces at play, realizing how much more complex the system is.
As far as advocacy, there's a big spectrum that includes a lot of issues that people are fighting for depending on their perspective. At one end, advocacy includes the development of new technologies and fighting for insurance coverage. We as patients have a right to have scientific efforts put towards our struggles, and compared to advances on iPhones and mobile apps, our technology is antiquated. That's a needed fight.
On the other end of the spectrum, advocacy includes ensuring that everyone has access to really basic care, test strips and insulin. Many countries, many communities, and many people struggle with lack of funds, insurance coverage, or access to supplies due to a myriad of socio and political issues. We as patients have a right to basic care and a right to live. That's also a needed fight. It's hard to feel the need to "pick one issue" as a means of banding together, because it feels then that we are giving up on other important things, and letting go of the healthy utopia we strive for. So we have two ends of this continuum being pushed forward. But the reality of the situation is that there is a shortage of advocates and leaders... not just in lobbying, but in other types of change-making as well.
What specific diabetes activities and advocacy are you involved with?
I am passionate about making life with diabetes easier for PWDs and their families, by providing decision-making support, help to navigate a complex healthcare world, and social support. I want to help empower PWDs to know their rights at the doctor’s office, and to make informed healthcare decisions to ensure the care that is best for their lifestyle.
I am also passionate about connecting diabetes advocates with the resources they need to effectively become leaders, improving the diabetes space. In 2017, I designed MasterLab Leadership Institute for DHF, an intensive, exciting, weekend conference featuring expert mentorship, leadership development, and social entrepreneurship workshops to support leaders implementing positive changes for the greater diabetes community.
Could this work have implications for causes beyond diabetes?
Certainly. With everything that's happened politically this year, it's also very clear that there is a long list of other worthy causes OUTSIDE of healthcare, and we're all spread thin. We aren't unlimited fountains of "fight" and we have to recognize that and get smart to prevent burnout. The upside of everything is that technology makes democracy easier and easier and traditional power dynamics are starting to shift. From my point of view, there is so much overlap between the diabetes community and other chronic disease communities -- and we're all fighting for the same base principles. My hope is that advances in civic tech will enable us to connect easier, see our commonalities quicker, and mobilize as a united force more efficiently.
What's next for you then? Something outside the diabetes world?
I am currently sketching out ideas for my next "side project." To be honest, with everything that's been happening with the current administration and healthcare, it's shifted my perspective on priorities and needs within our community. I just got accepted to a Los Angeles-based mentoring program, the Women's Accelerator Network. I will be paired with a female mentor for the course of 8 months, and plan to use that time and her expertise to refine my "personal mission" and goals for my work in the healthcare system. I definitely want to connect with other advocates in the space and brainstorm ways to impact the space moving forward; the DiabetesMine Innovation Summit will be a perfect place for some of those discussions!
What gets you excited or disappoints you as to diabetes innovations?
Development of the DIYPS (Do It Yourself Pancreas System by Dana Lewis and Scott Leibrand). Upon my diagnosis, I wondered why we weren't harnessing computing power to calculate and respond to blood sugar fluctuations, and why we as patients had to do complex mathematical calculations in our head, with extreme inaccuracy. It's inspiring to see this work come out of a patient-centered movement, that's working independently, without funding, and sits within the larger "maker" and "open source" movements with an emphasis on access for all. It shows the power of creativity and innovation outside established frameworks.
I am not currently using OpenAPS/Loop -- I'm on finger testing and MDI right now, but appreciate the movement and the strides it's taken for PWDs. From what I understand, the OpenAPS system requires an initial set-up trial and adjust effort; most of my bandwidth now is going into experimentation to figure out some suspected thyroid issues and food allergies contributing to brain fog and other system imbalances.
What do you think are the biggest challenges right now in the diabetes innovation landscape?
An unstable and already complex political and financial healthcare market which adds uncertainty to the riskiness that is inherent in innovation and startups. It creates a private market that is less attractive than other more stable sectors.
Developers and innovators working on the wrong part of the problem from the start or not doing enough early-stage patient feedback.
And perhaps stating the obvious, a pain point in many sectors, not just diabetes — is people working in silos, competing for the same funding, re-creating the wheel, and increasing inefficiency.
What ideas do you have to address these issues?
Three stand out for me:
- Create a platform like Idealist or Patreon to connect people working on projects to those who want to get involved.
- An online questionnaire to help patients craft a checklist of important questions to ask their doctor during their next visit, to improve the patient/HCP experience.
- Implementing an educational experience during a doctor's office wait time that introduces PWDs to emotional support and health literacy information to improve their decision-making in a confusing healthcare world.
Aside from those things, I see a large need for a platform that allows patients to quickly and easily “price compare” before they “shop.” Doctors and patients should be able to search online for a specific prescription that is covered in the patient’s health plan, and know the price, before the prescription is sent to the pharmacy. Same for selecting healthcare plans —we should have a standardized comparison tool that allows customizable patient information to be entered. CoveredCalifornia improved this system, but it could be expanded even more. This would require some political support as well as infrastructure needs.
Sounds like you're equipped to take a crack at those issues, no?
My dad is a handyman who can fix just about anything; from a stool in the garage at a young age, he taught me to see a problem, encounter roadblocks, and keep going until we found a solution that worked. As I went through my own diabetes experience, I used that to contemplate the macro-level problems, and kept asking, “How do we better articulate the patient experience, change policies and standards, leverage the power of our community network, and create innovative solutions to make life with diabetes better?” And down the rabbit hole we go!
What are you looking forward to about the Innovation Summit?
Meeting the other attendees! Ideas always seem to flow better in person, bouncing off others. Can’t wait to connect and learn from everyone else there.
Thanks for sharing, Mandy! We're looking forward to seeing you at the annual Innovation Summit and hearing more of your thoughts.