It’s not about being online. It’s about being empowered and engaged – thinking and speaking up.

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.


Posted in: e-patient stories | Why PM




10 Responses to “It’s not about being online. It’s about being empowered and engaged – thinking and speaking up.”

  1. Two interesting reads: Eve’s article and this article by e-Patient Dave. I’ll paraphrase parts of that for a French language post on my blog. Dave provides a simple and clear definition of the e-patient that needs to be spread around, as not that many people in my neck of the woods are aware of the ‘e-patient’ or of ‘participatory medicine’.

    Eve’s posts also provides plenty of inspiration as well, both from a patient’s perspective and from the resources that can be put in place – the Open to Options program – to help patients become engaged and empowered.

  2. Sue Woods says:

    Great posts.
    We need higher a higher benchmark for health professionals than ‘welcoming e-patients’. True, not all people want to be engaged but many can be encouraged, or levels of engagement wax and wane depending on circumstances. Professionals need skills that seek and nurture engagement. We need to get to where training programs, professional organizations and societies have such performance benchmarks baked into their expectations. Culture change, indeed.

  3. This is a well written article. A “Quick Reference Guide” for ePatients. For advocacy, for empowerment. A collective voice for change. Until patient safety is a benchmark across the continuum of care and transitions in care, we must empower others, and bring a light to those in darkness. It is our responsibility to engage our prisons, mental facilities & nursing homes. To be a voice for those who cannot speak because of fear, illness or reprisal. Care coordination is everyone’s right in today’s technology. Yet, there are still many areas where patient engagement is non- existent. We must engage for those who have no voice.

    • Hey Linda – thanks for the kind words.

      I’ll just add that in my view there’s no “until” to the process of empowerment – when we get to the point you describe, there will surely be new vistas where it’s useful to ask “What do we want? What could be better?” and find new ways to create it.

      I didn’t say it in the post but I’ve seen many cases where clinicians and hospital executives seem disempowered, e.g. “What choice do I have?? There’s nothing I can do about [Medicare rules, staff attitudes, insurance paperwork…]”

      So yeah, everything you said and more. In my view.

  4. @Natasha_Tracy, writer of Breaking Bipolar column, just posted a good companion piece Becoming an Empowered Loved One – An E-Patient’s Best Friend.

  5. On the SPM members’ listserv, new member Benoit Bisson, from Quebec, posted a stellar French edition of this message, e-patient et médecine participative, vous connaissez? (“e-patients and participatory medicine, you know?”)

    His site has a clever Google Translate widget on the right side, to turn it into pretty good English.

    Benoit, a journalist for over 30 years, is a member of Kidney Cancer Canada and ACOR’s kidney cancer listserv.

  6. Thanks, Dave. I just tweeted Natasha’s article. EXCELLENT!!! Not a should read, a MUST read!

  7. First, knowing Eve and Dave, it’s highly probable I have missed something about the story. That said….

    I am surprised by a few points in this ongoing conversation, taking place across blogs and listservs.

    Tom and the original group of people helping him, while he was writing his seminal white paper, had long conversations about the meaning of e- in e-patients. Saying that e- doesn’t refer at all to the significance of online is incorrect. In fact, the first meaning of “e-” for Tom and some of us, me included, started with “online”. None of what Tom wrote about could have been achieved without the presence of the internet. Removing that connection leads to forgetting the central importance of the internet and its influence on the movement created to promote his amazingly prescient vision.

    Reading the description of Desiree’s journey to find the treatment she accepted doesn’t mention even once a conversation between her and peers, without the interaction of any health professionals. That’s not the image of a contemporary empowered patient journey, IMO. In fact, I think that, in 2012, any cancer patient NOT joining a community of smart peers with cancer may be the best way to limit access to some of the information one needs to make fully informed decisions.

  8. @cascadia says:

    Although the word ePatient might have started out with an assumption that it required the internet my own personal health care experiences throughout my life and my experience in the AIDS community with empowered, enlightened engaged patients isn’t defined by the tools we use to get information although it certainly makes it much easier.

    My now late 70’s mom is one of the most empowered patients with an amazing network of friends who have supported her through successful treatment for breast cancer but very little of that required her use of the internet..

    Although I did the research that found the trial that probably saved her life it was her lifetime of being an empowered advocate fore herself that really defined her as an ePatient.

  9. […] in epatient, stands for "engaged," not "electronic" like in email. e-Patient Dave wrote recently: "Being online is a tool we use, but it’s not our […]

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