Empowering Health Consumers: Jessica Ching's Vision of Citizen Science in Healthcare
As our chief citizen scientist in residence, I would love to introduce Jessica Ching to our readers.
For over twenty years, Jessica has tirelessly championed a consumer-centric approach in healthcare. With a vast expertise spanning product development, regulatory frameworks, and market strategies, she imparts a unique perspective on how end-users, or "health consumers," are pivotal in determining the success of health-related products and services. Ching provocatively challenges the traditional patient role, advocating for consumer empowerment in healthcare decisions—a sector where, unlike most industries, the consumer’s voice and needs are often undervalued.
The conversation turns to the role of citizen scientists, where Ching articulates the importance of integrating everyday observation and data collection into our healthcare understanding—a practice not just limited to the sterility of laboratories but expanded into the fabric of daily life.
Let’s start with this idea of the “consumer” versus “patient”. Why do you call them consumers?
Although the health care distribution chain is extremely convoluted, consumer users are at the end of the line. Success or failure of health care products and services should hinge upon the ability to meet end user needs. It is the health consumer users who should be the basis of demand. Yet while “consumers” of other products have power, “patients” do not. Have you ever been told by a doctor’s office that you are not a customer, you are just the patient? I have, more than once. This disregard for the customer (you) underscores the root cause of many health care problems: you, and your opinion, and your needs, are not the most important factor in developing, designing, serving, or distributing health services. There are few industries in the world where this is true. The very premise of a patient being a means for other parties in the distribution chain to profit, is an obscene concept. No wonder why our country spends so much on health, but has such poor outcomes.
I did not know what a citizen scientist was until I met you. Now, I am in awe of what people like you are doing! Why are citizen scientists needed?
It’s a simple fact: health happens at home, at work, at school, everywhere. It rarely happens in the confines of a medical facility. Then, what better way to capture data, make observations, make adjustments, and keep doing this to get a desired outcome? It’s virtually impossible to do this routinely and among an entire population if science is limited to laboratories and institutions.
You built an artificial pancreas, Loop, and now teach other people to build their own. How and why did you do this?
#WeAreNotWaiting is the hashtag for the do-it-yourself Loop artificial pancreas movement. It’s self explanatory; some of us (myself included) didn’t have time to wait for industry to get there. I needed this device yesterday. Industry requirements and interests did not align with my personal needs. So the system was created; it beat commercial systems to market by several years. I help other people with diabetes find out about the system and point them to resources to get started, if that’s what they decide they want to do. The diabetes community is very tight and we rely on each other to optimize our health and lifestyles.
What have you learned from being a citizen scientist?
That it is possible, if you are willing to try. I think this is the biggest takeaway. It. Is. Possible.
We have spoken about how there is so much innovation happening outside the US. Why is this the case?
Each country has its barriers and its enablers. When there are more enablers, such as a regulatory friendly environment elsewhere, then some innovation will naturally gravitate toward that location. This is also true for human resources, they will go, and they will be developed in countries where the environment for such talent is optimal.
What is the intersection between big pharma, the FDA and citizen scientists?
Both the FDA and pharmaceutical companies are recognizing the power of individuals who are managing their health at home (at home being outside of medical institutions). The FDA now often will invite comments from users as part of their process in establishing new medical device guidelines, which is a great precedent for all parties involved. Why not ask the users themselves what they want, need, how they will actually use the devices, and what tradeoffs will they be willing to make (i.e. cost, inconvenience) in using the device? It’s brilliant… for the medical industry. I will tell you that in most other industries, even in the development of inconsequential products like laundry soap and spaghetti sauce, this is routinely done, so let's keep promoting the incorporation of consumer user preferences and user consideration in medical device development!
You worked for the XPRIZE leading their Life Sciences Team for 7 years. The XPRIZE mission is to bring about "radical breakthroughs for the benefit of humanity" through incentivized competition. What did you learn from this experience? What compelled you to work with them?
One of the most profound takeaways from working at a high level of thought and capability is that true breakthroughs in medicine, science, and technology - these breakthroughs are actually not made in medicine, science or technology. They are made in the mindset of the few who are willing to see and try new approaches. The biggest barriers to “radical breakthroughs” are the people we see when we look in the mirror.
How do we encourage more everyday citizens to get involved?
There is an underlying but substantive status quo that drives how people think. Even if you could make everyone aware of these biases, only a small portion of people will become citizen scientists. But that’s ok, because that is the principle of early adoption - and most of these people self identify. However there are a couple of factors that can accelerate this:
- Need. When you need something for your health and have exhausted all the ‘known’ or ‘accepted’ options, and maybe it’s really really important to your ehealth, then you might be willing to try another route.
- Sensors. The availability of health sensors, particularly Continuous Glucose Monitors (CGMs) is already changing the health care landscape and converting ordinary consumers into citizen scientists.
Why does it matter?
It only matters if YOU are the person who needs health care that is out of the box, that is affordable, that is approachable and spoken in your language, and that is made friendly and appealing to you. Again, the early adopters and pioneers will pave the way.
How do people get involved?
If you have a health need, find your tribe's people. The people who, for example, are one of the 200-300 kids or so who were given high doses of steroids, and grew up to be adults with severe bone and immune conditions that you have. The people/health consumers who have the same needs are you, hold powerful information on “clinical trials” on what works and what doesn’t, drug or other “therapies” for treating and managing the disease, living with the condition on your terms, etc.
What is one thing people can do today?
Be aware of the choices you have in health, including sources of information. A clinician’s opinion, a clinical trial or published study, a known drug - these are sources but the total of this information which the field may consider “the standard” may be far from the complete list of options available to you. There is much more about health that we don’t know than we know.
As you stay abreast of the latest technological breakthroughs, what are you most excited about and why?
The continued rise of consumer user groups as a source of information and experimentation, following the diabetes model, is promising. Genomic therapies are also on the horizon.
What is your dream product or service?
My dream is simple and achievable: incorporation of machine learning into an artificial pancreas system so that 1) the system could quickly learn patterns and settings with a starting guess that is only 65-70% correct; 2) the system could enable exercise to be undertaken (calories burned) without having to “eat back” any of the calories burned, and no low blood sugar from exercise; 3) the system would require minimal user effort and be enjoyable if not non-burdensome to use; 4) the system would be completely interoperable with other systems, devices, and therapies; 5) the system would continue to be open source and available to all.
What are you most hopeful about?
Consumer user power in health and the leverage of social media to achieve this. Me and Jane Goodall!
How do you think our lives will change in 5, 10 and 20 years?
- 5 years: not much.
- 10 years: a little change.
- 20 years: maybe more change.
I am not that optimistic about changing the healthcare system in the US long term, because the vested interests are, well, they are very vested. If you as an individual want to make the change you really have to want to do it.
What is something that you want to share that I haven’t asked?
I eat sweets every day. I love them!
I want to thank Jessica for her honest and thoughtful approach to the world of health. I have personally witnessed what is possible when just one person cares to make a change. As she alluded to earlier, need is the greatest driver for change. This needs drives everyday individuals to investigate, initiate, discover and share their knowledge. This is such an exciting time in which we live. I wholeheartedly believe that we have within our reach, the ability to take control of our health in ways that we have never been able to before - and in less than a decade. I am more optimistic than Jess, but that is the wonderful nature of discourse. We can differ in opinions and yet come together for a shared vision - to help empower individuals with information and tools to take control of their health!