e-Patient Dave

Power to the Patient!

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How early should patient voices be heard in the research process?

Timeline graphic - when to involve patients?
Click to enlarge. Graphic by Bettina Ryll, MD/PhD, Melanoma Patient Network Europe (MPNE) in EORTC patient course 2014

I’m in Madrid at the ESMO Congress, “the European ASCO.” (ESMO is the European Society for Medical Oncology; ASCO is the American Society of Clinical Oncology, and its annual conference is huge, as is ESMO’s – over 18,000 attendees.)

Yesterday I led a session titled Meaningful patient involvement in clinical trial endpoints, and a couple of slides stopped me in my tracks. (If you don’t know the term “endpoints,” see discussion below. In short, it’s what they decide to measure, to see if a treatment is effective.)

The first slide here (click it to enlarge) points out a disconnect: the yellow triangle shows that today, patients are mostly involved toward the end of the process – after someone has decided what should be studied, and designed a trial to do that. At bottom right, in the blue band, we see that in this model the patient’s role is “doing things right.”

But the creator of this slide is German doctor Bettina Ryll (living in Sweden), whose husband died of malignant melanoma. [Read more…]

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Slides and links for today’s presentation to Rotary Club of Seattle

Seattle Rotary web bannerUpdated 9/29 with the promised additions

Seattle has the world’s biggest Rotary Club – a lot of sharp, focused Seattle business people. Very different from my usual talk to a medical conference … I’m talkin’ to these people as patients and family members! So the content is different, and some is new this week.

Here’s the video (32 minutes):

Seattle Rotary #4, September 24, 2014 on Vimeo.

Two notes about the video:

  • The fonts didn’t upload correctly so some of the layouts overflowed. (30 years into desktop publishing and they still can’t make it work reliably!) An accurate PDF of the slides is on Slideshare.
  • Around 31 minutes I say that I’ll post my call to action online: our society needs mid-level managers who know how to create a team and produce a result! They’re on slides 50-56.

As promised, links to material cited in the talk:
[Read more…]

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Speaker Academy #18: Client Honor Roll – great and valued business partners

This is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to speak on a subject but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.

In #16 I said “For a small business, cash is king.” This is especially true for patients who are trying to build a small business in speaking, with no financial backing. In this post I want to “spotlight the spotless” – my clients who have honored our partnership by paying every single invoice within the agreed time of 30 days. Thank you!! A couple of foonotes before we start:

  • Date range: This is for events starting January 2013 and ending April 2014. (This May’s events haven’t reached 30 days yet.)
    • I hope to dig back earlier, but before 2013 I was in survival mode and my records were sometimes not accurate. Meanwhile, clients – if you remind me that you paid promptly I’ll be glad to include you – just let me know!
  • Special honor: Some clients are so great that they’re in a special category – they paid on-site or EARLY! (And they reimbursed my out-of-pocket expenses promptly.) So I’ll start with them:

[Read more…]

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Patient Voice Institute launches

PVI logo

On May 14, PVI founder Pat Mastors  closed the Health 2.0 “HX Refactored” conference by announcing PVI. See the hxr2014 Twitter archive here.
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As regular readers know, I’ve been running a series called Speaker Academy, to share with other patients some of my methods as a voice of the patient. I do this because

  1. The audience for patient voices has expanded dramatically in the past few years. Conferences and policy meetings need more patient voices.
  2. Medicine (the profession and the policy world) need to hear from more diverse voices
  3. Hundreds, if not thousands, of patients and family want to be effective voices in fixing or transforming healthcare.  But wanting to do something is a far cry from being effective at it. We need to develop professional skills among patient voices.

And that’s what’s behind the launch today of the new Patient Voice Institute, “gathering and sharing the wisdom of patients.” Check out the rich set of information on the website.

Patients Included badgeThis is a logical next step, a maturing of, the excellent Patients Included initiative started by @LucienEngelen at Radboud University Medical Center in the Netherlands. He’s the crazy Dutch innovator who produced the TEDx conference where I and many other patients gave speeches.

“Never forget that a small group of
thoughtful, committed people
can change the world. Indeed,
it’s the only thing that has.” – MargaretMead

Conceived and brought to life in just a few months by Pat Mastors and Diane Stollenwerk, with copious work by Diane’s colleague Emily Henry, PVI intends to bring professionalism and a reliable brand to the world of incorporating patient voices in medical work.

[Read more…]

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Finally! Composite video of my call to action at Blue Button Plus Developer Challenge (New York, July 22)

Blue Button Plus event artLast month I blogged that a “lost speech” had finally surfaced. It was my closing speech at an event last July, and said why this moment (this year, this series of conferences) is an essential turning point:

“The event was a conference conducted by our Department of Health & Human Services to educate and encourage software developers about the “Blue Button Plus” initiative. … which is really important for the future of health IT, and not just in America; this innovation initiative will change what patients and families are capable of.”

And I said:
[Read more…]

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Speaker Academy #14: core speech elements – “Data makes you credible. Stories make you memorable.”

This is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to give a talk but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.

Several times a week  I find myself citing this tweet, from Sept. 5. That means it’s time to blog it, so I can find it when I want to.:-)

Tweet: Data makes you credible, stories make you memorable

It’s by Elizabeth Bailey @PatientPOV, author of The Patient’s Checklist.

This is vital advice for patients who have a story and want to be a memorable, effective speaker. I know you want to tell your story, partly because you want others to know what you went through, partly so they can be better prepared themselves as a patient, and often because you want to raise awareness of the issues you faced. It’s important: stories evoke emotion and lead to caring. Stories connect to the base of the brain, and can be compelling.

But although a single story can be compelling, it’s not enough to create change. A single story is called an anecdote – an isolated case – and every scientist and every policy person is trained to not build policy on a single case. A foundation for change requires larger data.

I’d never heard someone connect those dots as clearly as this tweet – and that’s why I’ve been quoting this tweet so much. In my own speeches, I tell my story, and then I back it up with data:

  • “If I read two articles a day, after a year I’d be 400 years behind.”
  • “The lethal lag time: research doesn’t reach doctors until 2-5 years later”
  • “Zero cases of ‘death by googling’ in a three year search”

Depending on the audience I’ll then pull out other facts, but those are the core. So: the basic structure of my talks is this:

  1. Connect with people’s hearts with your story
  2. Present facts (data) that establish “It’s not just me. This is big enough to do something about.”
  3. Then you need to give them a clear sense that they can do something about it – it’s not hopeless.
    • This is vital – people hate to feel hopeless, so you have to show them a pathway to a better future, or they’ll stop thinking about you, your story, and your data … just as surely as when you cause cognitive dissonance (Speaker Academy #4).

Future posts will get into the third one. It’s important, because while #1 and #2  create the need for change, the last thing you want to do is leave the audience just feeling bad or feeling powerless.

Thank you, Elizabeth!

Next in the series: #15: The contract