In all this discourse about how technology is going to liberate us from the paternalistic approach to health, patient voice is still barely heard.
“The future has arrived — it’s just not evenly distributed yet." William Gibson
Digital Health proposes to change medicine, mainly by empowering people. Not long ago, Anna McCollister-Slipp (2014) pointed out the harsh truth about Digital Health today: it is not the technology that we are missing, it is a certain socio-cultural dynamic needed to let it happen. Her heart-felt article made me realize that in all this discourse about how technology is going to liberate us from the paternalistic approach to health, and how we can defeat diseases with binary codes, patient voice is still barely heard. The lay person to be transformed by Digital Health remains a “third-person word” (Dave deBronkart 2011).
In sickness and in health
Medical knowledge has become more digitized and it has escaped the confined space of medical training, the clinic or the hospital. Moreover, our body itself escapes the confinement of the traditional medical setting and becomes “viewable” (Nettleton 2004).
Digital Health aims to provide the means by which people may reclaim understanding and control over health. There are three distinct categories of people who may become empowered: health and wellness seekers, patients, and caregivers. Self trackers can be any one of them, regardless of doing it digitally or not.
The last two categories are the most debated because of the existing socio-cultural patterns. Etymologically, a patient is a person who suffers. Medical dictionaries also consider patients to be people registered with a doctor, irrelevant of their sufferings. Therefore, national health systems may conceive all citizens as patients by birth alone. It's important to note that in Digital Health, “patient” most often designates the chronically ill. And I will do the same here.
Caregivers, as yet, are rarely considered to be a specific category. They were not acknowledged by healthcare before and they are still in the shadows. They are important however not only because of their increasing numbers, but because life is complicated.
“The demand for health services is determined in part by the patient and in part by the family/social group to which patients belong” (Windrum and Garcia-Goni 2008).
Most caregivers are looking after a member of their family, adult or child, but additionally many of them look after other adult relatives or friends. As Susannah Fox (2013) put it beautifully, this is “love made visible.”
84% of caregivers with Internet access say they went online within the past year to research health topics such as medical procedures, health insurance, and drug safety. Fox, Dugan and Purcell 2013
Are we too preoccupied to look at what technology alone can do, rather than to what it can do for us?
Am I going to die?
Susannah Fox (2013) is reminding us to start from the beginning: do we know what the questions are in order to look for the answers? She offers the powerful example from anthropologist Diana Forsyth (2002), who uncovered in the ‘90s how a group of neurologists failed to acknowledge the first and the most important question that migraine patients had: “Am I going to die?”
Therefore, the question is: do we listen to patients when designing or regulating Digital Health? Lucien Engelen is one of the adamant advocates for the patient's voice. Starting from a critical view of healthcare systems today, he launched the Patients Included™ Act (2012). On the footsteps of Stanford Medicine X or Doctors 2.0 & You, more health events (Engelen 2014) included or are going to include patients.
…for those of us who live with this data dysfunction, two or three years can make the difference between going blind or dying in our sleep. Anna McCollister-Slipp for Dan Munro 2014
The academic literature as well recognizes that the digital patient is not yet understood, but there are some insights from telemedicine studies (Lupton 2013). One being that besides its great potential, technology may cause confusion, anxiety or alienation. Another insight is that often there is more to a medical decision than data. Some medical decisions are made in spite of the data, in the realm of “intuitive medicine” (Christensen, Grossman and Hwang 2009).
Diabetes doesn’t define, but it explains me Kerri
Despite the dramatic effect an illness can cast over one’s life, it remains only one aspect of a patient’s complicated life. The medical encounter and treatment are not filtered on strong rationality, but get entangled in patients’ beliefs, lifestyle, idiosyncrasies and trust. It is time to listen not only to patients, but also to their caregivers. Possibly different from patients in their interests, concerns and approach to health, caregivers have an undeniable impact on a patient’s life and medical choices. Designing for patients should include consideration of caregivers.
My health data is killing me
…complains Tom Green (2015) with a touch of humour. If, overall, we are still falling short on employing technology where it is most beneficial, for patients (and their caregivers), did we get it right for people who want to be healthier or in control of their wellness? Although regulators seem to leave wellness alone, and there are so many apps and wearables out there, there is a persistent feeling of disenchantment.
We can track our activity and some health related data, but does it all make sense for us?
“…there is always a limitation when you’re designing an app of how much raw data you want the consumer to know versus having a built-in back end where there is somebody with a medical background, some kind of structure or framework, where the data that’s being collected can be interpreted and analyzed for the consumer” (Alisa Niksch in IMS report 2013).
Then… shall we ask our doctors about this data we collect?
“They’re just like, ‘OK, that’s neat. Sure. You still need to lose weight.’ I’m like, ‘Yes, I know!’ I feel like to them it’s like someone looking up symptoms on Google, and coming up with some crazy illness that they think they have” (Health Data Exploration Project 2014).
Do you listen? Here is Michael Seres’ patient wish list for 2014.
Data seems to be the Holy Grail for Digital Health. We want to get it, own it, protect it, understand it. Data is comfortable to relate to, because it gives a sense of unequivocal. But, as Susannah Fox (2015) keeps reminding us: narrative still matters.
Whilst we are energetically digging the trench between doctors and patients and filling it in with technology, do we listen to either of them?
Do they even listen to each other?
Cardiologist Eric Topol (2015) envisions a future where patients and doctors are partners. “You’ll still be seeing doctors—but you’ll have a lot more control.” He considers that patients will not simply be engaged in their health through technology, but will be emancipated.
It seems we are constantly looking ahead, rather than working with what is already here. The emancipated future is here; how can we make it happen?
Let patients help
(Dave deBronkart 2011)
The emancipated patient is already here. 11Health for instance is fuelled by a patient’s knowledge, expertise and emancipation.
“…experienced patients do not necessarily serve as ‘amateur doctors’ who offer more accessible but less comprehensive or detailed medical information. Rather, they offer valuable personal information that clinicians cannot necessarily provide” (Hartzler and Pratt 2011).
They don't travel alone
Patients and doctors alike
To address the perceived antagonism between doctors and patients, there are a few companies founded by doctors for patients, grounded in a deep understanding of the healthcare systems’ shortcomings for the patients needs (i.e. PsychologyOnline, Propeller Health). There are even more examples of doctors and patients cofounding companies: Smart Patients, Sleepio or mySugr.
I do believe that patients need to take a more active role in how they manage their health but sometimes there is no substitute for just wanting your doctor to look after you. Seres 2013
“Curing disease is difficult” (Anna McCollister-Slipp 2014)—technology can already do so much. The grim reality is that we are not ready to let it happen. We have to move on and accept that health data is at the bare minimum co-owned by patients, by people. We are social: we share our lives with friends, family, doctors and sometimes total strangers. We share, whether anyone likes it or not. But more importantly, beyond personal health data, we share our knowledge and wisdom.
…78% of respondents answering “Probably Would” or “Definitely Would” when asked if they would be willing to share personal health and activity data with researchers. Health Data Exploration Project 2014
If we do not understand certain diseases, we do empathize with suffering. If we have never been sick, then we have loved someone who was. There is a beautiful thing about you, me and Digital Health: passion.