Author Archives: Paul Tarini

How the Future of Work May Impact Our Well-Being

May 15, 2020, 9:45 AM, Posted by Paul Tarini

COVID-19 has rapidly compounded problems shift workers and gig economy contractors face, with implications for individual, family, and community health. What can we do to advance health equity in this new reality? Apply for funding to help us explore.

A man driving a car.

Editor's Note: The health impacts of our rapidly changing work environment are often overlooked. Since 2018, when this post was first published, we reported on the health equity implications of unstable incomes, unpredictable schedules, and lack of access to paid sick leave. In the wake of COVID-19, these questions about health equity are more important than ever. See what we’ve learned, and apply for funding to explore what the next five to 15 years may hold for workers.

When her regular job hours were cut, Lulu, who is in her 30s and lives in New York, couldn’t find a new full-time job. Instead she now has to contend with unsteady income and an erratic schedule juggling five jobs from different online apps to make ends meet. Cole, in his first week as a rideshare driver in Atlanta, had to learn how to contend with intoxicated and belligerent passengers threatening his safety. Diana signed up to help with what had been described as a “moving job” on an app that links workers with gigs. When she arrived, she had to decide whether it was safe for her to clean up what looked to her like medical waste.

Work is a powerful determinant of health. As these stories about taxi, care, and cleaning work from a 2018 report show, it is a central organizing feature of our lives, our families, our neighborhoods, and our cities. And work—its schedules, demands, benefits, and pay—all formally and informally shape our opportunities to be healthy.

But the world of work is rapidly changing. Job instability and unpredictable earnings are a fact of life for millions. Regular schedules are disappearing. With “predictive scheduling,” a retail worker today is essentially on call, making everything from booking child care to getting a haircut impossible until the work schedule arrives. Health and other fringe benefits are less often tied to the job. Nearly six in ten low-wage workers today have no paid sick leave. Two-thirds lack access to employer-based health care benefits.

View full post

Researchers: How to Leverage Personal Data and Still Protect Privacy

Oct 24, 2019, 2:00 PM, Posted by Paul Tarini

The popularity of app-based research studies has soared, although plunging public trust in commercial technology companies could dampen enthusiasm and upend science if researchers don’t act quickly. 

A patient goes over app-based data with her clinician.

Nefarious cases of data sharing and data breaches are in the headlines on an uncomfortably regular basis. One recent exposé found period tracking apps were sending extremely personal information about millions of women directly to Facebook without their knowledge. This comes in conjunction with all-too-frequent corporate hacks—from credit cards to electronic health records and more—that leave consumers vulnerable and scrambling to reset passwords and freeze accounts. 

It’s a constant drumbeat that is feeding a climate of concern around our data: who has it, how safe it is, what it is being used for. 

Against this tumultuous backdrop, researchers around the world are launching studies that rely on smart phone apps and other digital devices to collect data. The hope is that these digital tools—and the data we provide through them—will enable more people to participate in studies and help accelerate medical discovery. But if researchers don’t act quickly, this turmoil around data privacy could upend their work.

View full post

Our Challenge: Measuring Mood for Apple’s ResearchKit

Apr 18, 2016, 9:45 AM, Posted by Paul Tarini

This $500K competition seeks proposals for studies that will further our understanding of mood and how it relates to daily life.

We know that mood is one of the keys to health. Whether you are happy, depressed, stressed out, anxious—all can impact your physical well-being. However, our knowledge of the relationship between mood and many social and economic factors—such as weather, pollution, access to food, sleep, and social connectedness—remains limited, despite decades of study.

Furthering scientific understanding of mood is critical to building a Culture of Health, and ResearchKit provides a novel way to build that understanding. Mobile-based clinical studies mounted with ResearchKit present exciting opportunities to increase participation in studies and to change the relationship between researchers and the people enrolled in those studies, which is why the Robert Wood Johnson Foundation is sponsoring the Mood Challenge for ResearchKit.

View full post

Engaging Patients in Research

Dec 3, 2013, 8:00 AM, Posted by Paul Tarini

What happens when you engage patients in research? That’s a question RWJF is exploring with grants to Sage Bionetworks and PatientsLikeMe to build online, open-source platforms that give patients the opportunity to contribute to and collaborate on research.

Sage Bionetworks’ BRIDGE platform will allow patients to share and track their health data and collaborate on research into diseases and health problems that matter most to them. Three research projects will be piloted on BRIDGE in the coming year, focusing on diabetes, Fanconi anemia and sleeping disorders.

PatientsLikeMe’s Open Research Exchange (ORE) will give researchers and patients a space to work together to develop health outcome measures that better reflect outcomes that are meaningful to patients. After several months building the ORE, PatientsLikeMe is now in testing mode, putting the platform through its paces. But it’s not just an academic exercise. PatientsLikeMe has recruited four researchers to pilot the ORE. These researchers will be providing feedback on the site while working with patients in the PatientsLikeMe network to develop and test an initial set of health outcome measures.

Sage Bionetwork’s Stephen Friend discusses collaboration between patients and researchers

View full post

What's Next Health: Moving Into a World of Exponential Change

Jun 21, 2013, 8:00 AM, Posted by Paul Tarini

Daniel Kraft Daniel Kraft

Each month, What’s Next Health talks with leading thinkers about the future of health and health care. Recently, we talked with Daniel Kraft, medicine and neuroscience chair at Singularity University and executive director of FutureMed, about the potential of exponential technologies to accelerate change. In this post, Senior Program Officer Paul Tarini reflects on Daniel's visit to the Foundation.

When we look at new technology, especially health care technology, we often ignore expense for the excitement of the new. More than one paper has been written citing new technology as an underlying driver of rising health care costs. 

Some of this is the result of the problems we want our technology to solve. We tend to lean toward developing and employing new technologies that are “heavy” interventions against a particular disease, and those technologies are more likely to be expensive.  

But when you start looking at technologies that are more about helping people live healthier lives, more behavioral, more wellness facing, these will likely be less expensive and their impact will be more exponential.

View full post

Are We The Source of Knowledge?

Apr 26, 2011, 3:01 AM, Posted by Paul Tarini

Are We The Source of Knowledge?

We started hearing about it a couple years ago: an ALS member of Patients Like Me had seen (and translated—it was in Italian) a medical conference poster with results showing lithium carbonate could slow the disease’s progression.  That study was a single-blind trial of 16 treated patients and 28 controls.  The results spread through the ALS community and soon, patients began talking their physicians into prescribing lithium carbonate off-label. PLM soon had 348 members reporting on the effects of their use of the drug.

 PLM realized they had an opportunity to study the experience of their members who were—effectively—experimenting with the drug.  PLM couldn’t randomize, so they developed an algorithm and matched 149 treated patients to 447 controls based on the progression of their disease course.

 On Sunday, the journal Nature Biotechnology published PLM’s findings showing after 12 months of treatment, lithium carbonate had no effect on disease progression.  PLM reports that subsequent clinical trials reached similar conclusions.

 What’s important here is to recognize the potential to conduct research using patient self-reported data from an online social community.  PLM’s sweet spot is social communities for ambiguous diseases (that is, diseases we’re still learning about, diseases that don’t have clear, effective treatment protocols) where the patient does a lot of care at home.  To be sure, PLM is a pretty sophisticated community, but it’s intriguing to think about where we might be in 10-15 years.

A couple of us met last week with PLM’s Jamie Heywood and Dave Clifford.  We had a ranging discussion—hard to avoid with Heywood—that included linking patient self-reported data with clinicians, conducting research with this data, and business models.  A fundamental question Heywood is exploring is “whether it’s faster to get to learning health system through the current confines of the health system or through something like PLM.”

Given the growing ability and inclination of patients to capture and share details on their own experiences, how powerful a role is there for the analysis of this sort of data in our efforts to accelerate the discovery of new treatments for disease?

This commentary originally appeared on the RWJF Pioneering Ideas blog.

A Forum on Disruptive Innovation in Healthcare

Jul 19, 2008, 11:04 AM, Posted by Paul Tarini

The Innosight Institute, the non-profit think tank founded by Harvard B-School Professor Clayton Christensen, put on a conference last week called, A Forum on Disruptive Innovation in Healthcare.

Prof. Christensen developed the theory of disruptive innovation and is currently working on a book on the subject. One of his co-authors is Jason Hwang, MD, MBA, who served as a judge for the Disruptive Innovations competition Pioneer sponsored through Changemakers. Those of us at the meeting were treated to a glimpse of the still-being-drafted book, which was pretty interesting. I’m keen to read the final version.

Elliott Fisher, MD, of Dartmouth Atlas fame, set the stage for the forum by taking us on a flyover of "everything that’s wrong with health care in America." Fisher then presented seven causes, which I thought was a pretty succinct list:

  1. There’s a lack of clarity in the US on the aim of health care;
  2. There’s inadequate evidence to evaluate the effectiveness of both biologically-targeted interventions and delivery systems. Fisher asserted that the current discussions around comparative effectiveness were not paying nearly enough attention to the effectiveness of different types of delivery systems;
  3. There’s a public assumption that more care is better care (Fisher has published results demonstrating that more care can actually lead to poorer outcomes);
  4. Medicine is practiced (and taught) in a model of professional autonomy and authority that is outdated;
  5. There’s a lack of accountability for capacity, quality and costs;
  6. Current quality measures reinforce fragmentation, in that they’re too focused on performance within individual care settings and don’t track quality across the continuum of care; and
  7. Payment incentives are flawed.

Wow.

Another big chunk of discussion focused on the development of more precise diagnostic tests, how they will drive the move to personalized medicine and disrupt the current paradigm of “trial and error medicine,” according to speaker Mara Aspinall, former president of Genzyme Genetics, which provides diagnostic services. As example of new precision, Aspinall noted that we can now diagnose 38 different types of leukemia and 50 different types of lymphoma. That increase in diagnostic precision tracks with the increase in five-year survival rates.

Looked at through the lens of Disruptive Innovation, what you see is a technological innovation—increased diagnostic precision—commoditizes expertise. The growing development and use of more precise diagnostics moves us closer to rules-based—and evidence-based—practice.

And the ability to use rules to guide activity—care—is an important pre-condition that permits a Disruptive Innovation. Once you have evidence-based rules that determine a course of action, you don’t need someone with the highest level of training to take that action, because you don’t need as much judgment and intuition. In the case of health care, this means less expensive caregivers can do more complicated things.

Then came Christensen’s discussion of how Disruptive Innovation can transform the health care system. Christensen’s take is that the network effects of the existing health care ecosystem (the relationships among hospitals, providers, plans) make it impossible for our current system to change sufficiently to solve the problems we have with health care today. I think he would assert that the current system simply can’t improve its way out of its current limitations, so the only way to fix the problems we face is through disruptive innovations.

The cool part came when Christensen reframed of the current business models in health care in such a way so as to identify opportunities for disruption. I don’t want to steal the thunder of the forth-coming book, so just when this blog is getting interesting, I need to stop. But suffice it to say, I plan to read this book carefully when it’s published.

This commentary originally appeared on the RWJF Pioneering Ideas blog.