Major updates made Sunday 10/6.

Today I had a rare privilege and challenge: I spoke to a kind of audience I’d never addressed before – the World Parkinson Congress in Montreal. I was one of four speakers in a two hour session “New Views of Managing Parkinson’s Disease”; we each had 25 minutes plus Q&A. Above is a photo I took from the stage – a big hall at the Palais de Congres, with over 2,000 in the room.

I composed a talk about patient empowerment (in the context of Parkinson’s) based on things I’d learned about the disease community – and, importantly, research issues – from two good friends with the disease, Sara Riggare of Sweden and Perry Cohen of DC. They must have coached me well, because four times I was unexpectedly interrupted by applause. It was webcast, and video of the session should be published in a day or two.

One item I noted in the talk was a brand new, magnificent book [right] that was launched at the conference, conceived, written, edited and produced entirely by patients. In my view this book is the instant exemplar of how patients can define their disease to the world: the experience of getting the diagnosis, exploring treatment options with each other, coping with life with the disease, and much more. It’s a gorgeous, browsable, full color coffee table book – you can jump in anywhere. More on this book later.

Here’s a version of today’s slides, modified to be more understandable without the audio:

There was enough interest that we added an unscheduled breakout session in a side room – thanks to organizer Eli Pollard for her quick response!

The unplanned session truly had no plan – we started talking and taking notes. In a sense this was an example of a point I make frequently: patients know what patients want to know. It was great to see the fire and hope in the eyes of these patients and caregivers who want so much to define the future on their own terms, given the constraints of the future they own. I took notes as we talked (using the room’s projector) and promised to publish them.
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Notes from “birds of a feather” session

Sunday update: I think most of the subjects we covered are included here; anyone who was there, if I missed anything, holler in a comment.

Choices and power in how we look at things:

• In my talk I’d noted what I learned about outlook from my kidney cancer patient peers (on ACOR.org, now SmartPatients.com): “If you don’t want to die of cancer, live long enough to die of something else first.” Several people told me what a liberating “mind pop” that was.
• Similarly, with PD, you might choose to live long enough – or slow your decline long enough – for the next amazing breakthrough to come along. Who knows??  There are no guarantees, but then there are no guarantees something good won’t happen. Until you’re dead, be fully alive!

See also “Hope” below.

What is empowerment?

I got such an education on this subject that I’ll post about it separately. For now, here are points from the session:

• Disempowered = “There’s nothing I can do about it”
• One patient’s view:  “I’m here for a good time, even if it’s not for a long time” – sometimes our “helpers” take away that power
• One patient noted an organization that says “We’re here for you” – she wants someone who’ll say “We’re here with you”
  • Compare to Medicare’s “Partnership for Patients” vs Regina Holliday’s patient-defined “Partnership with Patients” conference.
  • This isn’t just “nutty fruitcake” stuff; the establishment is getting on board: Last February the Institute of Medicine [IOM] had a workshop on partnering with patients, and released this report in August.
    • This 7 minute video from the event starts with IOM President Harvey Fineberg saying how important this is – and even talks about patients driving and participating in research.
• My oncologist had told me that they’re trained not to give patients “false hope.” I understand this – who wants to hear, at the end, “But doctor – you told me there was hope.:-(” But having survived, I also said “But what about false no hope??”
• I cited Jerome Groopman MD’s excellent book The Anatomy of Hope, about what he’d learned in his own long career, and the emerging biological evidence on “the anatomy of hope.”

Medication issues

A caregiver expressed frustration that some of their docs don’t know much about the meds they prescribe

• Cited a doc who had never seen the pills he was prescribing
• Got switched to a generic pill that was too small for the caregiver to handle, let alone the patient with PD. What are they thinking???

Clinical trials and evidence-based medicine

• The placebo effect: if during a trial something beneficial happens that’s not clearly part of the design, should it be discarded because scientifically it’s “noise,” not” good evidence”? Or should it be viewed as a bonus, to be explored??
  • Researchers commonly say “If it’s not what we were studying, we have to get rid of it.” I understand the scientific method – but patients with this declining condition sometimes say, “Whatever that was, STUDY IT!!!”
• One patient said: “They’re always saying the disease is different for everyone –  so shouldn’t we be able to decide things??”
• We touched on the history of how medicine views evidence:
  • Decades ago we relied on authority, aka “expert-based medicine” – “Dr. X is the authority in this field.” In essence, doctors relied on word of mouth from other doctors.
  • Unfortunately that led to unwarranted practice variation (see my 2010 post on it.
  • The remedy to this was to teach doctors evidence-based medicine [EBM] – to ask “What’s the evidence?” and to reject anything for which there’s no evidence. Yet.
    • EBM is great when the evidence is good and when there is evidence. But many patients live in a world where there’s no evidence about reliable next steps. As I said in my first post on EBM,

“On the fringes of medical knowledge,
lives are at stake and medicine doesn’t have the answers yet.
What do you do?”

• • In practice, EBM sometimes leads to a sense of false certainty that if there’s evidence it’s reliable, and if there’s no published literature it shouldn’t be discussed.
    • I noted the information on side effects I got from my patient peers, which my oncologist says may have contributed to saving my life! Clearly that information is valuable, but I doubt it’ll ever be in a peer reviewed article.
    • Except, it is reviewed by my peers – the patients who share my point of view.

Support groups / peer groups:

• Susannah Fox at Pew Research is the top authority on what she calls “peer to peer healthcare.”
  • It’s one aspect of her superb work on what people actually do – and don’t do – regarding health online. A “tip sheet” large collection of her most quotable data points is at bit.ly/PewHealthTips.
• In my view, our patient peers are “People who see things my way.”
  • This gained new importance a year ago when the Institute of Medicine issued a new report that said medicine needs to be “anchored on patient needs and perspectives.” Anchored on the patient’s way of seeing things?? Wow! Tell your doctors!

Hope

A big issue for Parkinson patients is hope: when it disappears, people decline visibly and quickly. Of course, hope isn’t something you can study like a drug; there’s no evidence that it affects progression of the disease. (How would you measure it and dose it??)

Time after time I’ve heard of scientists who, being careful and rigorous, avoid giving patients “false hope.” In my speech I recounted a similar conversation with my oncologist, in which I’d said to him “But what about false no hope??” because of patients who’ve done so well. (That was one of the unexpected applause lines.) In the side session we discussed it more:

• “We came to give you hope” – physics – reductionism vs emergence (I told about my best friend, an Israeli physicist, who during my own illness visited me to give me hope. This surprised me because he’s a strict rigorous scientist; he cited the field of “emergence,” in which hope is no joke.)
  • I’m no expert at this but Peter Schmidt of National Parkinson Foundation, a skilled mathemetician, noted that in emergence a little bit of something can encourage or cause the creation of more of it. If you know this subject better than I, please discuss it in the comments!
• I also noted the oncologist I met, after my illness, who said he used to tell patients there wasn’t much hope, and he’d watch them shrivel… now, he says, he replies “I don’t know if we can save you – but we will try.”  And, “Just one thing – if we succeed, you must drive carefully!” :-)

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Other notes

I’ll add to this as I recall things – this was from the one session where I spoke.

• A stirring, evocative dance video by Parkinson’s patient Pamela Quinn