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Researcher seeks patient input: what should a stent decision aid include?

Preface by e-Patient Dave: We have often written here (see posts) about Shared Decision Making, in which patients are engaged in choosing among treatment options. A key method is to give patients a “decision aid” (DA) – a document or video that explains the options, with pro’s and cons.

A vital question in the design of a DA is, which factors should patients be informed about? And who decides that? In this case a researcher is asking for patient opinions (!) on what should be included in a DA for stents. (See the National Institutes of Health introduction to stents.) SPM member Marilyn Mann (@MarilynMann) knows a lot about stents – this is her first post here.

Adnan Chhatriwalla, MD, is a cardiologist at Saint Luke’s Mid America Heart Institute in Kansas City, and is co-investigator for DECIDE-PCI, a study designed to develop and test a decision aid (DA) for patients who have decided to have one or more stents inserted in their coronary arteries. (Note: this is not about whether to have a stent at all — that would be a separate decision.)

The DA would help these patients choose between the two types of stents — bare metal stents and drug-eluting stents.

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Let’s crowdsource what a “good” medical record tool for patients is (and list some products)

Ah, social media. On Facebook a couple of hours ago, Swedish SPM member Sara Riggare posted:

Capture of Sara's initial Facebook post

Responses were quick and robust:

  • “Web MD has an app that you can download that I use. I find it pretty useful.” - Mark Burek
  • “That’s a sticky question. I tried Caresync ([SPM member Amy McFall Gleason’s app) and thought it useful. I think I’ll check out the app Mark recommended.” – SPM member Casey Quinlan
  • Have you tried Family Medical Manager?” – Pernilla Jackson
  • “Although I’m not a user with active conditions to manage, I’m strongly drawn to Hello Doctor. I was an advisor for a short time but withdrew because I wanted to be able to talk about it, unencumbered. A big limiting factor is that it’s iPad-iPhone only.” – me
  • “We should include the blog post by Society for Participatory Medicine president-elect Nick Dawson, “Evernote is my EMR.” – me

In minutes the idea arose of starting a discussion here on the blog – a much better place than Facebook for a discussion you want to return to. Then this:

Amy, I’m thinking this could become a totally unguided exploratory spreadsheet (Google Doc), with features down the left side and products across the top. It may soon become too big to be usable so something fancier is needed, but we could start.

So here we are:

This is a spontaneous project to collect thoughts on two things:

  • What good tools do we know of, to keep track of our own health information?
  • And by the way, what do we mean by “good”?? What features do we (the patients, the users, the ultimate stakeholder) say we want?

We’ll start with comments on this post. Game on!

By the way, we’ll welcome non-hype contributions from makers of such products. Give a short description of the product and link to its site. Our goal is to inform e-patients and families about their options – and about what factors to consider.


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Recently in JoPM: Jessie Gruman tribute, book review on asthma

JoPM logoWe don’t tell you often enough here of new pieces in JoPM, our Journal of Participatory Medicine. Of course you can subscribe to the journal on their site, but I hope to specifically point things out here. (See also our past posts in the JoPM category.) Here are two recent ones:

  • Book Review: A Cure for Asthma? What Your Doctor Isn’t Telling You — And Why (June 26), by Shahank Kraleti MD and Diane Jarrett EdD (U of Arkansas for Medical Sciences, Little Rock), on the decades of work by David Hahn, MD to get medicine to listen to the results he’s had in curing asthma in many patients, through antibiotics. It’s not a miracle cure of course; he asks medicine to listen, test his ideas, do more research. My view: e-patient families should certainly know about this option.

Two other posts are forthcoming this week about specific, important items in JoPM. Again, you can subscribe on the right side of the JoPM site, so you’ll get notified promptly of all new releases, even if we’re late in our reporting here.


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Communicating the experience of illness in the digital age

At 9am on Sunday, Sept. 7, 2014, Stanford Medicine X will host a discussion led by Pamela Ressler, Colleen Young, Meredith Gould and me about the power and pitfalls of people sharing their health experiences online.

We are “flipping” the panel by sharing resources and participating in online discussions throughout the summer, hoping to include as many people as possible in the process. You can check out our Storify, which lists our ongoing series of blog posts (this one is the second — Pam kicked it off on her blog last week.)

I thought I’d share some historical context. Because really, none of what we plan to discuss is new. It’s ancient. People have always gathered together to share what they know about health and illness, hoping to help and learn from others. What’s new is that we have the ability to expand our networks, inject more data and background resources into the conversation, and then archive them for later searching or other use.

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Susannah Fox is leaving Pew Research

I know many of our readers already saw this, but, from her personal blog:

Screen capture from her blog post

In one way, I’m sad to see that her work at Pew is over. In her 14 years there, time after time her work made clear what was actually happening as people use the internet in pursuing health. Time after time this popped a rumor balloon.

But though she’s leaving Pew, her work continues: her post says she’s writing a book (! … can’t wait to read that), and she has a new part time gig at the Robert Wood Johnson Foundation. I can’t imagine a better place – RWJF has been pivotal to our movement: they funded the e-Patient White Paper by our founder “Doc Tom” Ferguson, and they’re all about creating a culture of health.

Susannah’s 245 blog posts at are here, and her 14 years of work at Pew are here.

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Guest post by Zack Berger, MD, PhD: The pledge of the patient-centered physician

Zack Berger MD, PhDThis blog welcomes guest posts from SPM members on relevant topics. Zack Berger of Johns Hopkins (@ZackBergerMDPhD) is highly committed to participatory medicine, and as this post shows, his book Talking To Your Doctor gets right down into the how-to’s. (More on this at end of post.)

This is his pledge as a patient-centered clinician. – e-Patient Dave

The pledge of the patient-centered physician

Medicine is a relationship between two people. I have my expectations, needs, and wants, and the patient has theirs.

However, the patient’s needs, wants, and expectations are more important than my own. She is the center of her health.

I will always:

  • Ask the patient what she wants, hopes, fears, believes to be true about her health.
  • Ask the patient what she prefers.
  • Tell the patient what options are available.
  • If I am not able to do what the patient wants, explain why not.
  • Ask the patient what her priorities are – whether in the moment, or in general.

I will never:

  • Assume that the patient wants the same things I do.
  • Blame the patient for their illness.
  • Belittle the patient for powerlessness.
  • Treat a patient worse than I would treat a family member.
  • Check a box before I check with the patient.

How I arrived at the pledge:

Doctors are talking a lot these days about being “patient-centered,” but most of it, especially at the institutional level, is feel-good boilerplate without much bite. Eventually we need to get to realizable behaviors that every practitioner is expected to adhere to. At this stage, we need to advance from general principles to more detailed statements. This is what I am trying to do here.

Zackary Berger, MD, PhDZackary Berger, MD, PhD, is an internist and epidemiologist at the Johns Hopkins School of Medicine in Baltimore, with a joint appointment at the Johns Hopkins School of Public Health and Associate Faculty at the Johns Hopkins Berman Institute of Bioethics. He maintains an active practice as a primary care doctor and precepts in the residents’ adult medicine clinic. 

His research centers on the role of the primary care doctor in cancer care, particularly prostate cancer, and doctor-patient communication in general. He is particularly interested in how provider and patient can navigate through situations of medical uncertainty buttressed by an ongoing caring relationship. Berger’s book, Talking To Your Doctor, came out in 2013, and his next book, Making Sense of Medicine, is due out in 2016. 

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Jessie Christine Gruman, 1953-2014

Jessie GrumanI’m saddened (really saddened, as I write this) to report that one of the titans of our movement, Jessie Gruman, died unexpectedly yesterday at home in New York. She had long been sick, but the demise was sudden.

In addition to the mountain of work she produced as founder of the Center for Advancing Health (CFAH), Jessie was one of the early forces in SPM: she was the founding co-editor-in-chief of our Journal of Participatory Medicine (JoPM). As many of you know, she was in her fourth cancer, all initiated by the megadoses of radiation she got as a teen for her lymphoma, before medicine knew it would later cause cancer after cancer in adulthood.

(Other well-known lymphoma e-patients in our community include Alicia Staley and Kym Martin, wife of “Gimme My DaM Data” songwriter Ross Martin).

SPM President Josh Seidman was one of the Ziff Patient Engagement Fellows sponsored by CFAH, so he was among the first to be notified.  In an email last night he wrote to some of us,

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Keeping Patients in the Dark: SIIPC14



Several SPM members were in attendance at the recent SIIPC14 conference at Dartmouth, where the ongoing work on healthcare system transformation  has been the source of much great content on over the years.

Casey Quinlan – yes, yours truly – has put up a post on the Mighty Mouth blog that gives one woman’s perspective on the conversation in the room and on Twitter during the conference, and in some precincts since.

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The Doctor as Patient

Charlotte Yeh is the Chief Medical Officer of AARP Services, and has had a long career in government and as a practicing emergency physician. (Our paths first crossed years ago when we were both working on pre-hospital care reform in Massachusetts.) She wrote a piece published in the current issue of Health Affairs about her experience as a patient after being hit by a car while crossing the street in Washington, DC. Read it. After detailing her frustration with the clinicians in the acute setting more focused on protocols and diagnostic testing than on the patient before them, and her satisfaction with the clinicians in the rehabilitation setting who asked her to define her own goals, she concludes:

If I resolved anything on my care journey, it is that the “North Star” guiding all care must be providers using “any means possible,” to know the patient, hear the patient, and respond to what matters to the patient. It should make no difference where you practice; any provider can do this. Emergency departments can’t hide behind the excuses of “we’re too busy” or “it’s too chaotic” to avoid connecting with every patient.

It is time to frame a new paradigm of care, a consumer-driven approach that concentrates attention on the art of medicine. This might begin with a reinvigorated focus on patient-centered care and mastering the skills of listening, empathy, and patient partnership.

Strong words from a clinical leader, published in in a journal that is a key forum for health policy discussion. Here’s hoping that she is able to engage others in this conversation in a meaningful way.

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Of half gods and mortals: Aesculapian authority

Written in collaboration with Linda Trietler, MSN, RN – PhD student. 

Review of Kalisch, B. J. (1975). Of half-gods and mortals: Aesculapian authority. Nursing Outlook, 23(1), 22-28.

As we work to develop a collaborative and patient centered health care system we must remain aware of where we started and why the system needed to change. In 1975, thirty-nine years ago, Kalisch wrote that the traditional patient-physician relationship is based on the phenomenon of “Aesculapian Authority.” Aesculapius is the ancient Roman “god of medicine” and as such, was revered and wielded great control over people’s lives. It is interesting to note that the author, a nurse, states that the inspiration for the paper was her own experience as a patient and being hospitalized.

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