If you have not yet read the reflection by David Gustafson in the "A Piece of Mind" section of JAMA from January 16 this year, please do yourself a favor and look this piece up!

Dave Gustafson - an accomplished systems enginner for healthcare delivery processes (including the father of the greatly succesful CHESS program) and the director of one of our sister CECCRs (the one at the University of Wisconsin) shares his experience as a patient (A Systems Engineer meets the system).

Let me share one thought from Dave on how to achieve greatness in care delivery:

"How do you get people to work with this kind of dedication?

One answer, I've learned, is to hire on attitude. Look for people with the energy that suggests the capacity for this kind of commitment. Another answer: Don't tolerate mediocrity. The burden caused by medicore people falls on conscientious people. If the burden becomes too great, the conscientious people leave. You're left with mediocrity. Finally, lead by example. This starts with the chief executive officer personally experiencing what it's like to be a patient in your organization. This means doing a "walk-through." A walk-through gives the leader who does it first-hand experience of what is and what isn't working. It produces a list of things to fix and a greater urgency to fix them."

--

Borsika Rabin
Staff Researcher/Research Coordinator
KPCO

NPR had a story about a month ago on cancer patients who blog about their illness. In a previous post (August  14, 2012), I wrote about a young woman who was candidly blogging about her illness to the New York Times and giving a very real and personal account of her treatment, struggles, and emotions. While her very personal and public experiences with cancer were honest and at times humorous, the NPR story emphasized just how important blogging can be to some patients, and just how big the blogging community is (and growing) for those diagnosed with cancer.

Social media has increasingly become a constant presence in our lives. With sites like Facebook, Twitter, Instagram, and YouTube, it is easy to keep a large number of people up-to-date on many aspects of our lives. However, when it comes to illness, these sites may not be the best place for a cancer patient to express their feelings in such a public forum. The article highlighted a number of websites that are geared toward patients with illnesses, not just cancer, that provide a safe space for patients to blog for themselves, for others, and even for their families, if they choose to share. These sites are bringing to light a topic that is generally avoided, but the information from the bloggers perspective can help their families understand how they are feeling, as well as their doctors. As one person interviewed in the story said, "They don't have to dodge the hard questions, because the patient is able to tell their story openly and frankly."

As healthcare becomes increasingly more patient-centered, it's important to give patients the resources they need to discuss their illness openly. A hospice medical director states the following in the story: "I think these blogs help physicians and nurses see their patients as [people]." While social media is helping those patients express themselves as they go through their illness, in turn, these blogs are helping others (the readers) evaluate their own lives.  The story ends with this quote from the same hospice medical director: "I think it helps us check up on our own mortality. Am I doing the things I want to do? Am I making a difference? These are positive questions that can get lost in the shuffle of the day."

Michelle Henton
Senior Research Assistant, CCRC
KPCO

I had the great fortune to present with some lead figures of e-health research last week at the SBM conference. The panel insluded Gary Kreps as the moderator. If you happen not to know Dr. Kreps - here is a brief bio:

Gary L. Kreps (Ph.D., University of Southern California) is a  University Distinguished Professor and Chair of the Department of Communication at George Mason University (GMU) in Fairfax, VA. He also holds a joint faculty appointment with the National Center for Biodefense at GMU. Prior to his appointment at GMU, he served for five years as the founding Chief of the Health Communication and Informatics Research Branch at the National Cancer Institute (NCI), where he planned, developed, and coordinated major new national research and outreach initiatives concerning risk communication, health promotion, behavior change, technology development, and information dissemination to promote effective cancer prevention, screening, control, care, and survivorship.

At the panel discussion Dr. Kreps identified 5 major points/features that developers of e-health interventions shoudl embrace (and do a better job at) - note that these are paraphrased based on my hectic notes:

E-health interventions should be:

1. User-centered - need to engage end-users early on and regularly throughout the development process

2. Interactive - instead of creating electronic posters and passive information we should engage end-users as much as possible

3. Multi-modal - where we don't put all our eggs into one basket, use multiple approaches (e-health being one) and also explore the role of human contact in delivering these interventions

4. Intellligent - we need to create interventions that are smart and able to adjust to the user's needs

5. Integrated - interventions that are built into people's lives - naturally flows from everyday activities

And he noted: To create adaptive systems that are able to have these five characteristics need to be developed by collaboartions between behavior scientists and IT groups.

Borsika Rabin, CRN CCRC

George Gopen doesn't only dance, sing, and do stand up comedy in one act on stage. Using his amazing charisma, humor, examples from a wide variety of topics, and in depth knowledge of his content area, writing, he engages hundreds of busy health services, clinical, and public health researchers for a full day on the topic of commas, colons, and semi-colons. A professor from Duke, Dr. Gopen has been a professional writing consultant for 26 years. He is the author of several books and leads workshops and individual writer trainigns throughout the country. His article in American Scientist on "The Science of Scientific Writing," is among the top, most read aticles of this journal.  

As an appetizer, here are some thoughts of his work that you can access for free here:

http://www.americanscientist.org/issues/pub/the-science-of-scientific-writing

"Science is often hard to read. Most people assume that its difficulties are born out of necessity, out of the extreme complexity of scientific concepts, data and analysis. We argue here that complexity of thought need not lead to impenetrability of expression; we demonstrate a number of rhetorical principles that can produce clarity in communication without oversimplifying scientific issues. The results are substantive, not merely cosmetic: Improving the quality of writing actually improves the quality of thought."

"The fundamental purpose of scientific discourse is not the mere presentation of information and thought, but rather its actual communication. It does not matter how pleased an author might be to have converted all the right data into sentences and paragraphs; it matters only whether a large majority of the reading audience accurately perceives what the author had in mind. Therefore, in order to understand how best to improve writing, we would do well to understand better how readers go about reading." 

"A research article, for example, is generally divided into recognizable sections, sometimes labeled Introduction, Experimental Methods, Results and Discussion. When the sections are confused-when too much experimental detail is found in the Results section, or when discussion and results intermingle-readers are often equally confused. In smaller units of discourse the functional divisions are not so explicitly labeled, but readers have definite expectations all the same, and they search for certain information in particular places. If these structural expectations are continually violated, readers are forced to divert energy from understanding the content of a passage to unraveling its structure. As the complexity of the context increases moderately, the possibility of misinterpretation or noninterpretation increases dramatically."

(Excerpts from The Science of Scientific Writing  If the reader is to grasp what the writer means, the writer must understand what the reader needs by George Gopen and Judith Swan published in 1990 in American Scientist)

Borsika Rabin
Staff Researcher/Research Coordinator
KPCO

As a researcher, I attend a number of out of state professional meetings.  They typically occur in hotel conference rooms or offices, with fluorescent lighting and limited views of the outdoors.  On occasion, the meetings take place in beautiful cities or settings.  Without fail, I look forward to those meetings and build up my expectations.  But when I arrive, I realize that there is no time set aside to explore and enjoy, or that I over-commit, continuing to work alone or with colleagues after the scheduled sessions end.   When I do venture out (skipping some sessions), guilt quickly creeps in. 

Last week, the CRN-CCRC meeting took place at a beach resort in La Jolla, California.  Our conference room was just feet away from the beach giving us a clear view of the ocean.  As we sat around the table sipping our coffee discussing our daily agenda, we got a glance of the surfers on their boards, dolphins emerging out of the water, birds flying by and children playing on the sand.  Our meeting room was stocked with fresh fruit and mostly healthy snacks.  We met daily for 5 hours, having a clear expectation for productivity.  Interestingly, the surroundings did not detract or tempt us.  We engaged in deep dialogue, outlined our goals and the planned steps.  The sessions concluded after lunch, and we were permitted to use the afternoon as we desired.   I admit that one afternoon I had a pre-scheduled conference call.   But, rather than sitting in a fluorescent lit room, I propped myself up on a lounge chair, with a laptop, on the porch outside of my hotel room overlooking the ocean.  What a treat that was!  On other afternoons, I exercised, walked on the sand, explored La Jolla, and just relaxed.   The research team met again in the evenings on the beach, this time engaging in fireside conversations while toasting marshmallows.

So, why am I writing about this? This meeting left an impression and made me think about how we, as researchers, may achieve productivityandquality of life.  Much focus has been placed lately on patient-centered care, and that is in fact the driving force for our own work in the CRN-CCRC.   I am not suggesting that professional meetings should all take place at beach resorts.   But, we can encourage a more researcher-centered approach to such meetings.  In this stressful, financially insecure time for research, we need to aim for productivity yet find ways to nurture our well-being.  

Larissa Nekhlyudov, MD, MPH
Harvard Medical School/Harvard Vanguard Medical Associates