I had some questions, and Fard Johnmar had some answers. Our recent Q&A involved the new book he has co-authored with Rohit Bhargava called ePatient 2015: 15 Surprising Trends Changing Healthcare. Their book focuses on how a range of technology-influenced trends may or may not impact patients, including intriguing chapters like Multicultural Misalignment (when developers don’t account for diverse populations when making health tech innovations), Healthy Real Estate (the importance of healthy communities), or – my particular favourite – The Over-Quantified Self (the impact of too much health data).
I’ve written (here, here, here, and here, for example) about the Quantified Self movement. Quantified Selfers, in case you’re not one, are people who like to keep careful track of what they’re thinking, or doing, or thinking about doing. The outliers of the Quantified Self movement, the so-called early adopters of self-tracking technology, often represent the “worried well” among us, obsessively tracking their weight, mood, sex life, diet, exercise, sleep, daily stressors or any other health indicators remotely trackable in life simply because they can – and then often distributing these fascinating findings to their friends online, almost as if anybody else actually cares.
So, intrigued by a concept that seemed to mirror my own skepticism, I asked Fard the following questions:
CT: In your book, you cite Pew Research findings that only 21% of us use any form of technology to track health data, and Enspektos findings that “39% of ePatients use websites, mobile apps or other digital tools to track their health data”. What was your definition of an ePatient?
FJ: ePatient 2015 features original research from a study my firm Enspektos launched last year called digihealth pulse. In this study, we recruited a statistically representative group of people defined in previous Pew Research studies as “ePatients” – people who have used the web to search for health information for themselves or others. In our research, we define ePatients as individuals who have engaged in online health searches and use the web and social media regularly. We used Pew’s raw data set to identify what these people look like from a demographic perspective and recruited a population of people who fit these criteria.
Because ePatients are more digitally active and savvy, it’s not surprising that more of them have used technology to track their health status than the general Internet population.
CT: This chapter of your book makes assumptions similar to many sources that seem to equate “health tracking” (disease symptoms/glucose/blood pressure, etc.) with “fitness/lifestyle tracking” (e.g. fitness bands/watches/apps) as if they are the same thing. Real-Life patients with a Real-Life diagnosis may view these as two very different motivators. And as Liam Ryan of GetHealth once wrote: “The majority of people – the ones who are actually unhealthy and at-risk – are left feeling overwhelmed and unmotivated by long lists of numbers and detailed graphs.” Do you see any evidence of a movement to clearly differentiate these two kinds of self-tracking instead of continuing to lump them together under “health tracking”?
FJ: The Quantified Self/health self-tracking movement is so new (relatively speaking) that many people merge the two types of self-tracking activities currently. But, your point is a good one and in future studies we’ll look at making a distinction between these two groups of people. Yet when looking at our data from the perspective of people who have/do not have chronic conditions, we find that more people in the chronic condition group self-track, but this may be due to the fact that they are likely doing things like monitoring their blood sugar levels using technology.
CT: As a person who lives with debilitating symptoms of chronic disease every day, I was glad to see in this chapter a statement from Australian sociologist Dr. Deborah Lupton‘s 2013 article in the journal Social Theory and Health. She wrote: “The Over-Quantified Self becomes a problem when people are asked or required to collect and use health data in ways they are unwilling or unable to.” And your interview with digital health futurist Jody Ranck reinforced this by listing reasons that the Quantified Self movement may not be the saviour of health care as we know it. That list doesn’t sound particularly optimistic about the future of self-tracking for actual disease-monitoring purposes (i.e. not fitness-based). What’s your take on how the self-tracking tech industry is now or will be addressing these concerns?
FJ: To clarify, Professor Lupton was not referring specifically to the Over-Quantified Self issue in her work. However, she does make points about the issues associated with quantifying and digitizing health that fit perfectly with our overall points about the Over-Quantified Self problem.
That being said, one of the reasons we decided to focus on the trend we call the Over-Quantified Self is to bring greater attention to the problems associated with asking people who are unready or unwilling to engage in health quantification to do so. Another more important issue is the need to ensure people don’t believe that the simple delivery of health data is a solution.
We need to make health data actionable – i.e. making sure people know what to do with the information they receive via sensing devices, trackers, etc. We hope the book helps spark a conversation about these important themes and indeed, based on the outcomes of my early presentations about the book (delivered at the Health 2.0 conference and elsewhere), it appears that some people are starting to get and spread the message.
CT: In your Enspektos survey of ePatients, you asked participants about how concerned they were about information overload in self-tracking, noting:”People with chronic conditions (such as high blood pressure and cancer) were less concerned (53%) about information overload than ePatients without them (62%)”. But my own gut reaction to his statement was NOT, as you went on to explain, that these chronically ill patients “might welcome receiving detailed information about their health on a regular basis because the data could help them better manage their care” (if this were true, all of us would be chomping at the bit to start tracking!) Instead, I wonder if they may simply be too exhausted, too ill, or too overwhelmed to really care. Your comments?
FJ: Your point is well taken. However, from conversations I’ve had with innovators who have developed self-tracking tools for people with chronic conditions and my review of studies on this subject, there is evidence that some people with chronic conditions welcome having access to more health data, as it helps make them feel in control. Yet, as you mentioned, others reject health self-tracking and feel overwhelmed by it (which is part of the Over-Quantified Self problem). The key is to develop technologies that are usable, deliver actionable data and ensure that we understand whether people are willing and able to self-track and, if not, look for other ways to engage with them around their care.
CT: We know that only 5% of all apps (including “health” apps) are still in use 30 days after download. Yet every health-tracking start-up in Silicon Valley continues to churn out The Next Big Thing in technology that’s going to somehow save the future of health care (while of course making them multi-millionaires at the same time). How do you realistically see the industry addressing the growing glut of tracking apps (of questionable utility) despite the small number of actual successes?
FJ: This problem will be addressed via consolidation and synergies. Currently, there is a lot of activity in the investment and development space as companies vie for a piece of a large but finite pie.
However, investors, developers and others are now talking about how we need to be thinking bigger about the problems innovators are attempting to solve and bring together many technology solutions to address them. In some respects, U.S. insurance companies such as Aetna are leading the charge by developing highly integrated health and wellness technologies and tools for members. The digital health industry is still young and has many of the characteristics of other fast-moving, high-impact industries: many solutions, but fewer potential buyers. As it matures we’ll see fewer products, but potentially more effective solutions, or at least that’s the hope.
CT: One of the concerns for Real-Life Patients is the accuracy and trustworthiness of medical tracking technology. Do you anticipate an industry/government clearinghouse of the future in which health apps can be tested/’certified’ pre-launch?
FJ: There have been some efforts in the U.S. and around the world to regulate medical applications – especially those helping people conduct medical activities like test their urine for certain chemicals and other substances. There have been other fitful starts re the development of privately organized app rating efforts. It’s too early to say where the regulatory/private rating activities will lead us, but it’s clear people are thinking about app quality and usefulness very carefully.
CT: I’m curious about what led you and Rohit to write this book? And who is your book’s target market?
FJ: This book has been years in the making. Rohit and I met in person about four years ago at a famous hearing held at the U.S. Food and Drug Administration focusing on whether/how the agency should regulate pharmaceutical marketing on the web and social media. Afterward, we began talking about developing a book or report that would clarify and explain many of the fast-moving trends in the digital health technology arena. We were especially focused on ensuring that the human side of health’s future was at the forefront – rather than technology.
Currently, the digital health industry/landscape is accelerating rapidly.
Digital health investment activity is robust and new technologies and tools are being developed and introduced on a daily basis. We’re at an inflection point in terms of the many ways technology, history, culture and legislation will influence health care here and around the world. If ever there was a time to develop a book explaining these various trends and threads and bringing clarity to a very confusing topic, it’s now.
We hope this book will help patients, caregivers, innovators, government officials, marketers and others around the world understand the shape of the future health care landscape, provide them language to explain what’s coming, and spark needed conversations about issues such as the Over-Quantified Self.
CT: Donna Cusano (who casts A Gimlet Eye on health technology over at the Telecare Aware site) once wrote:
“The self-absorption of some QS adherents has a whiff of stark raving narcissism about it all.”
Is there a perception among those who are non-Quantified Selfers (or potential QSers) that this is somehow an unappealing private club they just are not interested in joining? Could the movement’s own reputation for self-absorbed navel-gazing itself be a barrier for some who might otherwise find tracking beneficial?
FJ: Yes. This is a point that Jody Ranck makes quite often. He’s a card-carrying Quantified Self advocate, but admits that it may only be attractive to a select group of individuals. He thinks one solution might be to change the name of the movement from Quantified Self to something else.
However, the Quantified Self movement is spreading from a small group to insurers, government and other players who see health data as the perfect means of monitoring and modifying health behaviors.
Self-tracking will be introduced to larger groups of people, either via the consumer market or due to corporate wellness initiatives that encourage self-tracking as a means of evaluating adherence to diets, medications or other health activities. More people will be asked (or required) to engage in self-tracking whether they are part of the Quantified Self movement or not.
Find out more about the book ePatient 2015: 15 Surprising Trends Changing Healthcare by Fard Johnmar and Rohit Bhargava.
- The Quantified Self meets The Urban Datasexual
- Can self-tracking drive you crazy?
- Self-tracking tech revolution? Not so fast…
- “Fewer numbers, more life experiences”
- Digital temptations: “Quantifying, tracking or gamifying everything”
- When the elephant in the room has no smartphone
Q: What’s your take on the Over-Quantified Self?
Carolyn, thank you for this post–and for your quite insightful (and very focused) questions.
1. It is curious to me that we conflate self-tracking with sensors and smartphones and other hardware, when people have–for decades–been tracking their health and fitness information using pencil and paper (or Excel spreadsheets). Why do we leave the old-school trackers out of the fold, I wonder? Is it because they don’t need what marketers like Nike and others are selling? Just because it isn’t shiny doesn’t mean a notebook can’t be a useful tool. I mention this also because there are millions of people who daily track their blood glucose levels, for example, and yet we leave them out of the QS conversation when app developers and others might have much to learn from them–ease of use, simple interfaces, and low-cost equipment, for starters.
2. Who owns the data? Who controls it? It’s no secret (as you note) that health apps are seen as the next key to riches for hordes of salivating developers. As users, we often forget that it is our data that is one of the most prized assets, and that developers are more than happy to offer free apps to get us to part with it. (This is especially true in the fitness app world.) Some members of the quantified self “movement” are addressing the issue of capturing personal data from the various apps, but that’s kind of like taking a picture of the horse as it leaves the barn. Developers do not want to daylight this issue, and certainly don’t want to share profits, either.
3. What happens when the nudge becomes a push? Am I the only one who shivered reading this quote (from Jonmar)?
“Self-tracking will be introduced to larger groups of people…due to corporate wellness initiatives that encourage self-tracking as a means of evaluating adherence to diets, medications or other health activities. More people will be asked (or required) to engage in self-tracking.” Oh, and see point #2.
So many astute comments, Angela – thank you for these! Some of my thoughts:
#1: according to Pew researchers, only 21% of self-trackers use technology to do so. The vast majority of those who say they’re tracking are doing so only “in their heads”, despite headlines that imply everybody’s using a mobile app for this purpose.
#2: I wrote last week about our digital footprint that marketers are stalking us for.
#3: No, you’re not the only one who shivered at Fard’s prediction of “required” self-tracking. Yoiks…
Thank you for your kind words (though, as they say in Nigeria, “It is easy to spit from the shoulders of a giant.” Your post is so stimulating that coming up with a bad comment would be kinda difficult, CT.
Keep kicking butt.
A spot on interview–and Fard is very clear about the disconnect between the worried well and those people who need the tracking most, but can’t make sense of all the data at a prime time for upset.
His last two paragraphs are, as Angela said, chilling. The invisible (to most) use of this data in a form of government/business surveillance is WRONG, yet we are ‘going along with the gag’. It’s not like this is crime or terrorism….
Thanks for weighing in here, Donna (and also for your eminently quotable quotes that I like to use whenever writing on this subject!) I agree – when Fard says: “More people will be asked (or required) to engage in self-tracking whether they are part of the Quantified Self movement or not”, that is indeed chilling.
Pretty sharp questions for Fard – I look forward to reading his book. Thanks for this teaser.