Screen shot of Eve Harris's postOn Monday Ileana Balcu posted about a great new article by SPM member Eve Harris, whom we’ve covered before. Eve’s post is a superb depiction of how an empowered patient – someone who knows how to think for themselves and speak up – will engage in their case.

These are the real “e”s in e-patient. This is a teachable moment, because as the e-patient meme has spread, it’s sometimes repeated incorrectly. It’s not about being online, it’s about being empowered and engaged.

From the opening of Eve’s post:

Desiree Basila was 52 when her stage zero breast cancer  … was diagnosed. While her cancer was found very early, she was ultimately diagnosed with the disease in both breasts. … Doctors said her only realistic treatment option was double mastectomy — which Basila opposed. “If I die at 75 instead of 95 I think I can live with that,” she told me recently. “I did not really want to have a double mastectomy.”

That’s empowered and engaged:

  • Empowered people think for themselves, know what they want, and speak up about it.
    • A disempowered person is recognized by how they shrug and say “Well, there’s nothin’ I can do about it…”
  • A person who’s engaged in their care is thinking, listening, wondering. “Are there any other options?” “Is this what’s best?”
    • In contrast, a disengaged patient more or less goes through the process with their eyes closed, like a car in a car wash.

Not everyone wants to be an e-patient, and that’s fine: some people just want to be taken care of. SPM doesn’t oppose that. We do advocate for recognition and acceptance of empowered, engaged patients as active players, in fixing healthcare and in each individual case.

Like Desiree Basila.

Language matters.

If people think e-patients are only saying “Let us google!” our movement will fail.

This is important. Being online is a tool we use, but it’s not our purpose.

Our work in the Society is to change culture, and that involves changing what people think about and how they think. And that all happens in language.

We must teach:

  • patients to be empowered and engaged
  • providers to welcome patients who speak up and who want to engage in care (and to stop discouraging that, as sometimes happens)
  • policy people everywhere (not just the US government) to encourage engagement and write policies that help. (For instance, Denmark famously has a great national EMR, but patients aren’t allowed to put data in it, or even get mistakes fixed!)
  • researchers to continue studying how patient engagement leads to better outcomes and satisfaction – and the role being online plays
  • industry to develop tools (gadgets, software, devices) that help us be engaged in our care, and to speak to us (market) in a way that recognizes our capacity as engaged partners.

Why the confusion?

When our founder “Doc Tom” Ferguson coined the term “e-patient” in the 1990s, the Web was only a few years old. In those days, any online patient was by definition empowered, activated, engaged. Back then online patients were outliers.

Not true today: almost everyone’s online. Our mission in SPM is not to get acceptance of googling, it’s to change the culture of medicine so that every provider, every insurance company, every vendor in the industry thinks in terms of putting power in the hands of the ultimate stakeholder: the patient, who’ll live, die – or lose body parts – in the process.

Thank you, Eve, for a great article. Thank you, Desiree, for who you are. And thank you, Ileana, for spotting this story on what was a busy news day for us here.

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