PatientPilot founder Grant Perry speaks at “Innovations in Patient Empowerment” conference

I participated in “Innovations in Patient Empowerment,” a fascinating and useful two-day conference in Pasadena that wrapped up on Monday.  It was organized by the Claremont Graduate University and Dr. Samir Chatterjee, among others.  The focus was on the potential impact of mobile and other wireless digital technologies on patients and the healthcare sector in general.

I put together and moderated a panel on “mHealth, the Media and Improving Health Literacy.”  The panelists were excellent:  Dr. Bruce Hensel, Chief Health, Science & Medical Editor and Correspondent for NBC4 (LA) and a professor at UCLA Medical School; and Dr. Samir Damani, Founder & CEO of MD Revolution, a medical practice focused on optimizing clinical care with the use of mobile health and genomic technology.

I opened the panel by briefly introducing myself and PatientPilot, and then I set the context for the discussion.  Here’s an excerpt:

We’re going to talk about how new applications and digital technologies can empower patients.  But we’re also going to discuss about how it’s not just a matter of switching the technologies on and expecting patients to be empowered.

This is Sir James Mackenzie.  In 1879, he started out as a GP in a mill town called Burnley, in Lancashire, north of Manchester.  He went on to become one of world’s leading experts on heart disease.  In 1913, Sir James established one of the first cardiac clinics – it was at the London Hospital, now the Royal London.  He invented what he called the polygraph, which allowed him to make simultaneous records of the arterial and venous pulses.  Mackenzie was a pioneer in the documentation and use of medical data.  But at the same time, as his biographer put it, “Signs and symptoms were certainly important, but they had to be interpreted against the wider backdrop – of the patient as a person and his response to an environment of home and work, of climbing hills and stairs – the whole art and process of living.”

So what is the broader societal context in which all these wonderful new mobile and digital technologies are being applied?

Let’s start by briefly identifying three broad environmental factors:

  • low health literacy
  • and two communications-related issues:  information overload and problematic media coverage of health-related issues

First, health literacy.  What is it?  According to the CDC, it is “the capacity to obtain, process, and understand basic health information and services to make appropriate health decisions.”  By the way, the Affordable Care Act defines literacy the same way except to add the word “communicate” – “the capacity to obtain, communicate, process, and understand basic health information and services…”

A couple of numbers:  According to an Annals of Internal Medicine systematic review published last year, “Approximately 80 million Americans have limited health literacy, which puts them at greater risk for poorer access to care and poorer health outcomes.”

Also, according to the CDC, “Nearly 9 out of 10 adults have difficulty using the everyday health information that is routinely available in our healthcare facilities, retail outlets, media and communities.”

Information overload:

15 years ago, author David Shenk coined the term “data smog” to describe the problem of too much data. As he put it in his book Data Smog, “…In a very short span of natural history, we have vaulted from a state of information scarcity to one of information surplus–from drought to flood in the geological blink of an eye.”

The problem is, how do people – patients – tell the difference between good and bad information?

They’re not always helped by the media.  There is, of course, good solid reporting of health issues by many medical journalists, including Dr. Bruce Hensel, who we’re about to hear from.  But, as we all know, there is a lot of hype, misreporting of studies, and just basic misinformation.

An example from just a few days ago… A Danish study showed a statistical association between statin use and fewer deaths from cancer. The excellent website HealthNewsReview cited misleading headlines about this observational study:

FOX News Radio



Medical Daily

Headlines like these sow confusion and science skepticism among patients.  So we’re going to look at  the whole environment in which potentially empowering digital technologies are being applied.

Certainly a central question for the medical community in implementing new digital technologies is

, as a healthcare trade magazine put it,  simply, Does Your Patient Really Understand?

Dr. Hensel, a physician with a long track record of solid medical reporting, was able to offer his perspective on how media coverage of medical issues affects health literacy and how the information glut can be a barrier to patient empowerment.  Dr. Damani discussed how the success of his individualized medicine approach depends in part on the way he and his team at MD Revolution communicate with patients.  In other words, MD Revolution needs to make sure that patients really understand and make sense of the personal data, genomic and otherwise, being gathered and tracked with new mobile and other technologies.

In sum, I think we were able to stimulate some thought among attendees of the conference about how mobile health technologies aren’t being applied in a vacuum.  Patients will come to them with different levels of health literacy and varying degrees of medical misinformation.  All the more reason that “trusted caregivers,” in the phrase used by more than one speaker at the conference, must engage with patients in helping them to use the new, empowering technologies.