Cancer Communication Research Center

Thoughts on Health Literacy


MazorThis week, I attended the American Public Health Association's annual meeting (APHA).  For the first time, the Medical Care section of APHA sponsored a session on health literacy, and it was both well attended and well received.  Dean Schillinger gave a brief summary of a recent Institute of Medicine report on characteristics of health literate organizations.  He spoke of the attributes and frameworks of a health literate organization.   The report with in-depth discussion of these can be found here, on pages 5-20.  The other presenters and I focused on health literacy as a patient characteristic.  I presented work our team has been doing on patient comprehension of spoken health messages.   Overall, this session further convinced me that if the increased attention to health literacy is to result in more effective communication, encourage high quality patient-centered care, and ultimately improve health, then we need to broaden our perspective to consider not only patients, clinicians and organizations but also the wider culture, including public education.  A solid secondary education with instruction in science and scientific reasoning seems an essential first step towards providing patients with the skills that they need in order to manage their health effectively today's information-dense environment.


Kathy Mazor

Co-Director, CCRC


Written by CCRC at 10:04

who's job is practice improvement?


Yesterday in a primary care clinic the challenge of quality improvement hit me square in the face.  The chief was interested in improving screening rates.  The nurse manager was interested in improved outcomes for patients.  The behavioral medicine specialist was intent on improving hand-offs and coordination.  And the research team had identified 7-8 ways to improve processes for one slice of daily patient diagnosis and routing.  But who's job was the subsequent implementation?  The researchers don't belong in the clinic; they're (sort of uninvited) guests.  The others all have very full jobs doing the work that could perhaps be made more efficient, effective, or caring.  The clinical staff want outside help in coordinating communication and changes in the EMR system with the IT department, but the research grant has ended.  So we offer to stay involved, coordinating things, trying to find answers from IT specialists, etc.  But that's not the traditional (nor even, sometimes, the allowed) research role.  Healthcare organizations like this one need a role defined as "Improvement Navigator" or some such title who can jump in and solve little and very important inter-departmental tasks and challenges; a solution-finder who can stitch together a new routing, specify a new workflow, get agreement from people in several units that ordinarily are doing their own things.  Anyone know of such roles in other healthcare systems? 

Jim Dearing
Director/PI, CCRC

Written by CCRC at 11:16

What can cancer control learn from the Million Hearts Initiative?


Over the past few weeks I have heard colleagues mentioning the Million Hearts Initiative at many different, unrelated forums.

"The Million Hearts™ is a national initiative to prevent 1 million heart attacks and strokes over five years. Million Hearts™ brings together communities, health systems, nonprofit organizations, federal agencies, and private-sector partners from across the country to fight heart disease and stroke.

Such broad collaboration for disease prevention is likely to be successful since it has the great potential to reach different stakeholders (e.g., policymakers, public health practitioners, health care providers, and patients) and will intervene at multiple levels. 

As I am reflecting on the history of cancer control - an area that usually champions novel approaches, I was unable to identify any similar, broad, concerted effort for the primary or secondary prevention of cancer where different stakeholder groups came together with such clear vision and shared goal and approaches.

I invite you all to learn about the Million Hearts Initiative and reflect on possible ways that cancer control could learn from this incredible work.

Borsika Rabin
Staff Researcher/Research Coordinator

Written by CCRC at 13:48

“I am a wife. A mother. A sister. A best friend. Remember this.”


This was the impassioned plea of Linda Nielson, a 15 year breast cancer survivor who spoke at the opening reception of the 2012 annual meeting of the five Centers of Excellence in Cancer Communication Research in Madison, WI.  Linda's talk, "Positive Unintended Consequences of Clinical Trial Participation," provided the 90 cancer communication researchers gathered for the meeting a unique perspective on the advantages and disadvantages of participating in breast cancer clinical trials.  As with any cancer diagnosis, difficulties abound.  In addition to the physical and emotional trials of her cancer, Linda has volunteered for countless clinical trials since her diagnosis, including a dosage trial that left her so ill her physician insisted that she withdraw from it.  

Her determination to contribute to cancer research remains unabated, and Linda counts many advantages of her diagnosis and her engagement with the world of cancer research, the most rewarding being the unexpected: she has met life-long friends through her engagement with the CHESS breast cancer support tool (currently being implemented at Kaiser Permanente in CO), and she is a co-founder and principal in a successful business manufacturing and distributing cancer support promotional materials ( ).  Linda also has a mission to help keep the cancer patient front and center in the minds of every cancer care provider, clinician, and researcher she meets.

On Wednesday morning, two days after Linda's talk at the opening reception, 90 cancer researchers gathered for the last time at the meeting in Madison.  NCI's Bob Croyle asked a panel of senior researchers representing the five CECCRs to reflect on what could be done in future research initiatives like the CECCR to quicken the start-up phase of the research.  Several scientists agreed that aligning priorities, knowledge, and language among the disparate foci of the Centers would hasten effective cross-fertilization of ideas and collaboration.  Then in a return to the theme of the opening reception, UW's Dave Gustafson reminded us to first and foremost consider carefully the lives and challenges of the customers we serve, the human beings who are cancer patients, who are also mothers and wives, sisters and best friends.

A Gift

Copyright© By Linda Nielsen

I was given a gift,
wrapped shabbily, it was non-returnable,
Reluctantly I accepted it.

In it I found courage I never knew existed
and a patience far beyond anything ever experienced.
I was given the ability to trust a stranger with that most
dear to me, and an endurance for the unknown.
I was given unconditional love of family and friends,
always there, never stopping, never faltering.
I was given many prayers from far and wide,
and the warmth of knowing I am truly cared about.
I was given a fond farewell of my modesty and vanity,
and the acceptance and love of an imperfect body.
I was given a strong shoulder to lean on
when that shoulder had once grown distant,
and laughter and good times, more special than ever before.
I was given many new friends,
wonderful, courageous women I am so very proud to know.
I was given warm sunshine and beautiful green grass,
blue skies, and sparkling city lights.
I was given things to see,
that once before were ignored.
I was given the chance to wake up,
instead of sleepwalking through life.
I was given every glorious day to enjoy,
every month to savor, every year to rejoice.
I was given the gift of life,
I was given breast cancer.


Sarah Madrid
Center Coordinator, CCRC

Written by CCRC at 16:10

Pineapple pancakes


Brian Mittman of the Veteran's Administration met with me this morning to go over our new assignment that the two of us share with Kathy Mazor as co-chairs of the Cancer Research Network's scientific working group in communication & dissemination research.  Over a plate of pineapple pancakes, Brian talked about the different D&I resources that his group within the VA has built up over the years, and how these resources may be of interest to cancer researchers in the 18 HMO Research Network research units.  Combined with resources currrently available on the CCRC site, we should be able to bring a suite of training materials, background papers, measurement instruments, and protocols to bear on CRN research.  We also will collaboratively plan some upcoming study proposals and conference presentations. 

Jim Dearing
Director/PI, CCRC

Written by CCRC at 11:12


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