Over the next two days, I’ll be part of a group convened by Eleonore Pauwels and Todd Kuiken to discuss barriers to citizen-driven biomedical research. If you are intrigued, read the report, “The Rise of the New Bio-citizen,” which lays out how people “are pursuing a range of activities from analyses of genomic data for diagnosing rare diseases, identification of potential therapeutic drugs, organization and crowdfunding of clinical trial cohorts, and even self-surveillance or self-experimentation.”
The organizers asked me to share my observations about “accelerators” for new research paradigms, such as precision medicine initiatives and peer-to-peer health. I thought I’d share a summary of what I plan to discuss, in the hopes that it sparks an idea for someone (and if so, please share your thoughts in the comments below).
- The internet and other digital technologies have shifted our culture to be more participatory, at least in terms of people’s access to information and to each other.
- There is a DIY, participatory movement in health, evidenced by pockets of interest in health tracking, n=1 experiments, people researching their own diagnoses and treatments, and people building and modifying medical and assistive devices. That’s the good news.
- But the current negative national mood and rising rates of depression may cut against a broad-based engagement in health, particularly related to cutting-edge research and federal government initiatives.
Leading indicators and evidence:
Access to health information is robust: Majority of U.S. adults have access to the internet (89%) and, of those, 59% of U.S. adults say they have looked online for information about a range of health topics in the past year. – Pew Research Center, 2013 study
A majority are tracking for health: Seven in ten U.S. adults track a health indicator for themselves or a loved one and many say this activity has changed their overall approach to health. Technology plays a minor role. – Pew Research Center, 2013 study
A small group of people seek peer health advice: One in four U.S. adults (24%) says that they turned to others who have the same health condition during their last bout with illness. One in four internet users (26%) have read or watched someone else’s experience about health or medical issues in the last 12 months. And 16% of internet users have gone online to find others who might share the same health concerns in the last year. – Pew Research Center, 2013 study. Examples.
Hardware innovation is happening: The Maker movement, combined with advances in consumer access to manufacturing and design tools, has yielded an extraordinary range of medical and assistive device innovations. Examples and background.
Sense of overall well-being is in decline in the U.S.: “Findings painted a bleak picture of the well-being of Americans with zero states improving well-being by a statistically significant measure – marking a first in the nearly 10-year history of the Gallup-Sharecare Well-Being Index. Despite the national downturn, the Gallup-Sharecare Well-Being Index found improvement in several traditional measures of physical health in 2017, such as the proportion of Americans reporting participation in regular exercise, abstention from smoking and being overweight.
…sharp declines in overall well-being were driven by drops in purpose and social well-being metrics, as well as the mental health aspects of physical well-being. Out of a possible score of 100, the national Well-Being Index score dropped from 62.1 in 2016 to 61.5 in 2017, marking the largest year-over-year decline since the index began in 2008.” – Gallup and Sharecare poll, “2017 State Well-Being Rankings”
Patient activation is associated with a life-changing diagnosis like cancer: People living with chronic conditions are less likely to be “activated patients” and therefore engaged in taking actions to better their health, according to research associated with the Patient Activation Measure. There are differences among chronic conditions: depression is associated with low activation, cancer is associated with higher activation. – 2008 study published by the Center for Studying Health System Change
Depression and other mental health challenges are on the rise: “During 2009–2012, 7.6% of Americans aged 12 and over had depression (moderate or severe depressive symptoms in the past 2 weeks). Depression was more prevalent among females and persons aged 40–59.” – National Health and Nutrition Examination Survey, 2009–2012. Note that this is an increase from 5.4% of Americans 12 years of age and older who reported experiencing depression in 2005-6. Further: “As of 2015, more than 43 million Americans experienced a mental health issue, more than 20 million had a substance use disorder and more than 8 million experienced both – and these numbers are likely to be underestimates due to stigma and lack of available treatment.” – Well Being Trust report, 2017.
The general public is worried about biomedical advances: “Majorities of U.S. adults say they would be “very” or “somewhat” worried about gene editing (68%), brain chips (69%) and synthetic blood (63%), while no more than half say they would be enthusiastic about each of these developments. Some people say they would be both enthusiastic and worried, but, overall, concern outpaces excitement.” – 2016 Pew Research study, “U.S. Public Wary of Biomedical Technologies to ‘Enhance’ Human Abilities”
Trust in government is at an all-time low: “Public trust in government, meanwhile, remains close to a historic low. Just 18% say they trust the federal government to do the right thing ‘just about always’ or ‘most of the time’ – a figure that has changed very little for more than a decade.” – Dec. 2017 Pew Research study, “Government Gets Lower Ratings for Handling Health Care, Environment, Disaster Response”
Clinical trials are broken: “The average amount of time from identifying useful study sites to launching a Phase 2 or Phase 3 trial now takes 31.4 weeks, or nearly eight months, which is one month longer than a decade ago, according to a survey conducted by the Tufts Center for the Study of Drug Development.” – STAT story. “Overall, a high percentage of sites under-enroll, and one in 10 sites are never activated…” – lead researcher at Tufts CSDD.
- How might we empower people to participate in research about their own diseases or conditions? (Be sure to read the responses, too.)
- Imagine: patients, families, and researchers all together at work or at play. Drawing blood, monitoring vital signs, and listening to an aria, all at the same time, dissolving the boundaries between them.
- 41% of adults are “activated patients”
What else do you recommend we look at? What other indications do you see in the landscape, either encouraging or discouraging people’s engagement in citizen science?
Featured image: Leaping Hare at Sunset, by Kevin Sawford, which I chose for the sense of possibility it conveys.
Paul Wicks says
Fab resources Susannah! I was just thinking this morning I wonder how these stats have changed (if at all) in the past year or two. Do you know if Pew or others are planning to hit refresh on these types of reports?
In terms of other things to look at or mention, I’d cite #WeAreNotWaiting as an example of where a small (and yes, probably unrepresentative) group can accelerate things. For instance one of the big insulin pump / CGM manufacturers admitted that their actions with the OpenAPS probably accelerated their plans for a commercial artificial pancreas by several years, and we know the FDA’s engagement with them have stimulated their thinking on how to approach biohackers.
As for engagement I’d say #PatientsIncluded has now been taken up by 50+ medical conferences (https://patientsincluded.org/conferences/accredited-conferences/) and the web has allowed increasing number of patients to act as peer reviewers at journals like the BMJ from around the globe. These are both markers of how the “angry masses” on the Twitters have evolved from chaining themselves to the railings to getting inside the building and starting to have more influence.
We still have a long way to go of course!
Susannah Fox says
I’m working with fellow researcher Vicky Rideout on a project sponsored by Hopelab and the Well Being Trust to measure adolescents’ & young adults’ use of social media to gather & share health information, particularly related to peer advice & emotional well-being. It’s my understanding that Pew Research does not plan to pick up the portfolio I left, but I’m working on a proposal to get fresh data on the adult population. I’ll share more when that project gets a little further along.
You’ll be pleased to know that Anna McCollister-Slipp was the first speaker at yesterday’s meeting, sharing her story of becoming (essentially) a bio-citizen and helping to start the #WeAreNotWaiting movement. Matt Might was the second speaker. Both were inspiring and informative – the perfect start to an excellent day of discussions surrounding ethics, legitimacy, and responsible governance in citizen-driven biomedical research and innovation.
Other topics included: Community biolabs and incubators; Accelerators (essentially: what are the ramps and bridges being built so that citizens can gain access to existing research platforms); narratives and What If scenarios to spark our imaginations; then governance and ethical issues.
I liked how the organizers framed the conversation by asking, right at the start, how this movement can go from “stunt to solution”. I’m using a notebook that is half sketchbook these days so I drew Evel Knievel jumping over a line of trucks vs. the national highway system in the U.S.
Throughout the day I drew a series of peaks and valleys – positives and negatives in the landscape. Here’s the list, first the positives:
– Organized patients and caregivers like #WeAreNotWaiting
– Guarded FDA support for open innovation
– Disintermediation of drug development tools
– Precision medicine and the idea that science IS action
– Undiagnosed Diseases Network has created turnkey web pages to help people find other patients
– NIH hosting testing and open data
– Natural experiments in a rare population that are now tracked in a scientific manner
– Social media connecting scientists
– Right to try laws
– Infrastructure for engagement
– Patient advocates in powerful positions
– Building a pipeline for innovators
– Bringing together multiple domains of expertise: artists, scientists, need-knowers
Now the negative forces:
– Lack of a will to change practices among device and drug makers
– People who say that any super-rare finding is “not actionable”
– Pockets of people who remain offline, unconnected to the internet and other resources
– Limits of funding; high costs of clinical trials
– Regulatory challenges
– Payers who don’t grok the need for innovative devices
We worked under Chatham House Rules, but here are some unattributed quotes and ideas I wrote down:
If you give people a target, they’ll go out and collect arrows.
In your household, parents are the FDA, deciding what is safe to try.
Why haven’t pharmaceutical companies followed the path of the big movie studios who saw the promise of indie film and just co-opted those techniques and styles? Or big beer companies who acquire or create “craft” brews when it’s clear that there’s real money & interest in that market?
What if science & medicine became like the restaurant industry? Open source “recipes” and then differentiate on delivery and service?
DIY biolabs that adhere to biosafety level 1 standards are less dangerous than someone bringing raw meat into their home kitchen to cook. Let them innovate!
Hackers, artists, entrepreneurs, and people facing death are all willing (and likely) to change lanes, try anything. But most people are not. Should this change? How might we change it?
Biologists can learn from jewelry designers about how to create tiny, exquisitely fine-tuned devices.
Research-grade tools are no longer limited to university and corporate labs. The foldscope and paperfuge are two examples.
That blast of air that hits your face when a New York City subway goes by is a massive cloud of rat dander.
Innovation looks like a skunkworks. It’s unfinished and messy. We need to be comfortable with that.
We are in a bio-information space race. And China is way, way ahead.
Baltimore Underground Science Space: BUGS
NOVA Labs hosts a DIY Biology meetup in Reston, VA
Podcast: Science Disrupt
Community Biotechnology initiative at MIT Media Lab
Two books to read together: Against Autonomy & Pharmaceutical Freedom.
Brianna Wolin says
I have read and re-read this post all week long. Thank you for putting together such a comprehensive look at the statistics surrounding the engaged patient.
I’m eager to hear more– and would love to find a way to get FYD involved in updating some of these stats, as mentioned in your last comment reply. Let’s chat?
Thanks again, Susannah!
Susannah Fox says
Thank you! With this encouragement I’m going to tweet a few of the links, hoping to spread the wealth. Too often research goes unread or forgotten and it’s up to us to remind people that some questions have been answered (or at least asked).
As for the research proposal, I’ll send you a note 🙂