People using the health care system can feel trapped in a labyrinth. They grope through dark hallways and dead-end alleys, arms outstretched, fumbling each step. All the while, they fear that another monster is lurking around the next corner: illness, injury, financial ruin.
Susannah Fox, author of “ rebel healthdepicts a reality many people face in today's healthcare system, a particularly dark reality for those living with rare diseases. But there is light in the labyrinth. we are not alone. By connecting and learning from each other, we can help each other better map the maze and find our way through it.
This will lead to a new “patient-driven revolution” in healthcare. Freethink recently sat down with Fox to discuss who is starting this revolution, how technology is making it possible to make it global, and how everyone can help. The interview has been edited for length and clarity.
Free thinking: Can you tell us a little about yourself and how you came to write this piece? rebel health?
Fox: I'm a health and technology strategist. While working at the Pew Research Center, I became interested in how the Internet was transforming healthcare. I was advised that if I wanted to understand the future of medicine, I should talk to people living with rare, life-altering diagnoses. Because they live on the cutting edge of science.
My research eventually led me to be invited to higher level conversations in the medical field. I worked at the Robert Wood Johnson Foundation, the largest philanthropic organization in the United States focused on health and healthcare. I was then invited to work in the Obama administration as the Chief Technology Officer for the Department of Health and Human Services.
Since then, I have divided my time between advising startups and traditional healthcare companies. I wrote this book to bring together his two groups of people: the medical rebels and the medical defenders (I think of it affectionately). .
Free thinking: What are the problems in our current healthcare system that a patient-led revolution could help solve or correct?
Fox: One of the main problems is that people feel left out. They feel invisible and their needs are not being met by the mainstream healthcare system.
It is important to note here that whether someone's needs are met is up to them. It's not up to the doctor or anyone else to say, “Hey, I gave you a prescription.” Why aren't your needs met? ” We need to see the true nature of suffering so that we can begin to solve the problems of those who are currently in despair.
When you receive a diagnosis, you may feel extremely exhausted or stunned and unable to do anything. But then something happens that makes you want to go out and find information or join a community for better support. And that's one of the ways the patient-led revolution can shine in our current healthcare system.
Leaders of the healthcare revolution
Free thinking: Who is leading this revolution?
Fox: The first type of person you will meet is a seeker. They are people looking for answers to their questions. Their characteristic is that they never give up. They go hunting and find what they need.
The second type is the networker. These are people who naturally form a community. If you find something useful, share it with everyone you know.
If the mainstream health system doesn't establish ways to learn from these types of people, we will lose a lot of insight.
suzanna fox
Another way the patient-driven revolution can benefit our current healthcare system is by leveraging the ingenuity of solvers. Solvers are people who can't wait to take devices apart and improve them. These are the people who hack medical devices and release data. They are inventing and improving assistive devices.
[Finally], Champions are those who have access to mainstream resources. They have the opportunity to recognize patient-led teams that are doing great work and provide them with everything they need to scale, including funding, mentorship, and access to facilities.
If the mainstream health system doesn't establish ways to learn from these types of people, we will lose a lot of insight.
Free thinking: You mention several historic patient-led revolutions in your book. Can you give me an example?
Fox: Alcoholics Anonymous is an example of a peer-led organization. [At the time], people with alcohol use disorders felt invisible. They felt their needs were not being met. No one wanted to talk about it and there was no good treatment. So in the 1930s, people banded together to create peer-to-peer solutions.
Another, more recent example is when AIDS and HIV emerged as public health threats in the 1980s. Frankly, this problem was ignored by many mainstream medical authorities, so people banded together to form teams of seekers, networkers, and solvers. They help create the science needed to prove that a particular treatment works, and some solvers work with leaders at the National Institutes of Health and the Food and Drug Administration to conduct clinical trials. We have changed our policy regarding the method.
The important point here is that many of the practices of radical peer-led health movements eventually moved into the mainstream.
Patient-led revolution v2.0
Free thinking: What makes today’s patient-led revolution different?
Fox: We have a long tradition of solvers solving things in their home workshops, but today everything is moving faster thanks to technology. They now have the opportunity to upload YouTube videos, share directions on instructables.com, and even post on social media to say, “Hey, I got this!”
Another opportunity is for people living with rare diagnoses to find others like them. That connection can be the key to finding the next step in your treatment plan or providing support to keep you on medication you don't want to take.
These opportunities tap into the same ancient instinct that we need to connect and learn from each other. It has now become a worldwide connection.
Free thinking: How does misinformation and disinformation challenge the patient-led revolution, and what can we do about it?
Fox: I love this question because this is not just a national threat. This is a threat to humanity, and we must all use our collective strength to combat it. Missing from the current public conversation is the opportunity to harness the patient-led revolution to combat misinformation and disinformation.
One way people can combat misinformation is by flooding the zone with science. But that can only happen if we have full and open access to the latest data, which is why we need open science.
There is now a policy in place that requires researchers to publish open access papers within one year if they receive funding from the federal government. I would like to see this limit reduced. This is because it cuts off the possibility for explorers and networkers to access the latest science they need at a critical time.
And when you think about a vibrant online community, many active members post regularly. So you can think of it like a healthy immune system. When someone posts bad advice or disinformation, a healthy community swarms like antibodies. They may delete the post, downvote it, or put a comment below it with evidence of why it's not true.
The downside, of course, is the constant online conversation. You can join the community and view posts before they are fact-checked. It's dangerous, but you can't throw the baby out with the bathwater. We need to find ways to provide information and fact-checking tools to people.
Building a Center of Excellence
Free thinking: What can established healthcare professionals learn from these patient-driven networks?
Fox: When businesses and government agencies realize they need new ideas to solve a problem, the best way to do so is to involve the people who are living with the problem.then [a company or agency] Become a champion.
One way I've seen champions flex their muscles is by hosting prize contests that anyone can participate in. This competition creates an outlet for new ideas and allows champions to learn from all kinds of people. It could be a group of entrepreneurs, a start-up, or a patient-led team.
The basic message is that we all have something to learn, we all have something to teach, and the internet makes this more visible and possible.
suzanna fox
Another method is called Learning Health Networks. It's when clinicians and researchers work together to try to improve the delivery of care for a particular disease or condition. What people have realized is that if patients and families participate in the research, more targeted research questions surface and we can learn more directly how to make things better.
A historical example is the amazing progress we've seen in cystic fibrosis. The Cystic Fibrosis Foundation essentially says, “Our children aren't living past the age of six. We're going to change that.'' So patients, families, scientists, and clinicians work together. and established a research center of excellence.
Free thinking: What can our readers do to join the patient-led revolution?
Fox: If you know something, find a way to share it. If you're a solver, please share any hacks you come up with. If you are a seasoned online researcher, be a friend and offer to help with research. Just as delicious as the covered dishes.
Free thinking: Lastly, please give a message to our readers.
Fox: The basic message is that we all have something to learn, we all have something to teach, and the internet makes this more visible and possible.
