Susannah Fox, former CTO of the U.S. Department of Health and Human Services and Entrepreneur in Residence at Robert Wood Johnson Foundation, tracks the consumption of information and data as indicators of trends. “I follow people with rare and life-changing diagnoses – they are the artists of healthcare,” she says.

In her 2016 Stanford MedicineX closing keynote address, Susannah illustrates how her work as CTO of HHS was to create access to a space for information, data and tools to be exchanged. She uses the example of how Gutenburg’s printing press not only sped up production, but liberated information to more than just the elite. Suddenly literature could be mass produced – and ideas and knowledge from across the socio-cultural and economic divides could be shared.

Susannah’s work at the Pew Research Center focused on understanding human behavior on the internet. Who was using the internet, when, and why? What sort of information were people seeking? As the internet developed and more information found its home there, what Gutenberg started with his printing press took new form. Not only was information accessible, but the people with the knowledge were accessible, too. Social media connected people to people and people to information and data.

Similar to the historical public sphere, where impassioned debate between those most invested occurred in the open, these energetic online exchanges between the most motivated information and data consumers and producers are the hotbeds of innovation.

Lead Users

Susannah and her team observed that caregivers and people with rare or chronic conditions sought health information on the internet more than others. These groups are motivated as patients, parents, and family caregivers to improve their situation and most importantly, they are the experts of their situations.

“These people push on healthcare until it breaks. And that’s what the maker movement is all about – they HAVE to create their own hacks to the system,” says Susannah. “Not only were they consuming tons of information and data, but they were also sharing. They are all the pioneers, hackers – the alpha geeks of healthcare. If you follow the alpha geeks and hackers, they’ll lead you to the future. The places they are pushing on the edges are where the signal needs to be raised. That’s where we need to boost access – those are the places humanity exists and artists thrive.”

Below is an interview with Susannah that I conducted for Atlas of Caregiving where we talked about how these motivated groups are driving innovation by demanding to be heard and seen.

Susan: Where did your interest in these groups, and in caregiving specifically, originate?

Susannah: Early on I saw how my parents were primary caregivers for my grandparents and I saw how they had to triage information and filter and communicate information to make informed decisions.

In the year 2000, my team at Pew Research were very interested in looking at demographic trends and how they were changing and not changing with the internet.

We saw that more and more people were becoming caregivers because of aging populations. We wanted to better understand this group and better identify caregivers and their behavior. We knew the best way to get an accurate portrait of someone doing the work of caregiving is to ask them about those activities related to caregiving – but importantly, to remove the word “caregiver” from any of the language asking about it.

We found and published in a 2012 Pew Research report that the population of caregivers was much larger than what we expected. Caregivers as a group are likely to turn up the volume on every information source available to them – connect to doctors and professionals, friends and family, community, neighbors – they are avid consumers of all sorts of information.

According to the report:

“Statistical analysis shows that being a caregiver has a significant association with an internet user’s likelihood to consult such reviews. It is not just that caregivers are more likely to be older, more highly educated, and living with chronic conditions (groups likely to do this type of research). Being a caregiver is independently associated with higher levels of a variety of health information-seeking behaviors.”

Caregivers push the envelope and demand new information, data, and tools that can help the to develop resiliency and self-efficiency.

Susan: How does Atlas’ work compare to other innovative companies out there?

Susannah: The reason that I am excited to advise Atlas of Caregiving is because I do see it as an innovative approach. I’m always looking for new technology helping to solve old problems – those problems that are so embedded in our culture that they seem unsolvable.

I love an innovative approach where a company “lifts the veil” to show that a problem is solvable.

Genius companies recognize what was previously invisible to the rest of us and they connect the invisible market to the invisible solution.

And I think that’s what Atlas of Caregiving is doing. As soon as people recognize all the work that caregivers are doing, then the veil is lifted.

Atlas is empowering with the use of the latest technology to help people see. It’s solving an old problem with new technology to help people really understand all the things that we do with our day.

Atlas is empowering people with knowledge about their own power – or lack thereof.

Susan: As former CTO of HHS, what are your views on caregiving in relation to our nation’s overall health and wellbeing?

Susannah: Rajiv [Atlas of Caregiving Founder and CEO] and I are on the same path – to recognize the humanity in healthcare. And key to this is building resilience within ourselves, our families, communities, and finally, nation. What HHS does is provides a system for national resilience – its entire pipeline is centered on the NIH, CDC, FDA, refugee programs, emergency response services – it’s all part of maintaining a national resilience. Resilience was central to the Obama administration agenda.

We can’t have a strong nation unless we know there’s food on the table, basic healthcare and a way to solve big and small problems.

During my time at HHS, I got to work with many career federal workers. In order to improve resiliency, they focused on empowering citizens with information, data, and tools. And that’s my mission – my mission is to help people gain access to information, data and tools to solve their own problems.

What is at the foundation of resiliency is being able to identify and create power. If we can help people recognize their own power – and to recognize their lack of power – then we’re igniting through that recognition an ability to make a change.

Susan: What impact does caregiving have on major societal issues?

Susannah: You can’t value something you don’t see. The invisible work that goes on at home that Atlas is helping us to literally map and understand dovetails into the social justice world that I’m following.

Ai-jen Poo is the Executive Director of the National Domestic Workers Alliance(NDWA) and the Co-director of the Caring Across Generations Campaign. She has been organizing immigrant women workers for over two decades, forging pathways to sustainable quality jobs for the caregiving workforce and working to ensure access to affordable care for the nation’s aging populations. She is also the author of The Age of Dignity: Preparing for the Elder Boom in a Changing America.

Central to her work is recognizing that If we look at the amount of unpaid caregiving that is going on and combine it with the paid work, it is a massive sector of our economy. In a Washington Post article, Poo says, “The biggest thing we hope to change Is to grant these domestic workers some basic respect and recognition of the value of their work.”

These are workers that allow the rest of us to go to work. They are the workers who enable home care. In the face of an aging population, Poo says we have the opportunity to create a caring system that allows for children, parents, and grandparents to be cared for.

I see the work that Atlas is doing as an essential part of the national understanding of this true economy. And it’s only in understanding the facts that we can recognize our nation’s full potential.

There’s a groundswell of patient stories happening across healthcare and increasingly, people with chronic conditions or rare diseases are finding information and communities online to unite and strengthen their voices demanding new and better solutions.

Similarly, how can we harness the energy that caregivers have in consuming information and media about health? How might we empower caregivers to share what they have learned? There’s a huge amount of information that caregivers have that is not being fed back into the healthcare system.

One reason we haven’t started doing that is that most people don’t know it’s there. It’s an untapped resource in healthcare – we’re leaving half the team on the bench.

Atlas is recognizing those team members and trying to collect their incredible depth of knowledge.

I hope my contribution is to help caregivers be able to communicate what their world is like. Once we recognize that it exists we can start to tap into it.