Meredith Hurston, #HCHLITSS Guest September 17, 2015

We are very excited to have as our guest on #HCHLITSS Thursday September 17, 2015 Meredith Hurston. Here is a short bio.

#hchlitssMeredith Hurston is a native of Flint, MI and finished her undergraduate studies at The University of Michigan-Flint. After completing a graduate degree in healthcare administration, she now works at the nation’s top rated hospital in Baltimore, Maryland. She is a board certified Clinical Laboratory Scientist currently focusing her efforts on healthcare quality and patient safety. Her reputation as a passionate, no-nonsense advocate for patients and their safety has created a buzz in the medical community. Driven by faith and dedication to closing the gap in healthcare disparities, Meredith serves as an ePatient Advisor to the Stanford Medicine X program. Meredith believes in strengthening the health literacy of patients, families and consumers to improve their confidence when speaking to medical professionals. This key element will allow more patients to take an active role in decision-making for their health. She has committed the use of her voice to make that happen. She is the host of Take Charge of Your Own Health podcast and curates The Empowered Mocha Patient, an online health resource especially for African-Americans.

She will be facilitating a workshop at the Stanford Medicine X |Ed conference, which precedes MedX. Her workshop is designed for healthcare students and educators and will teach strategies for patient engagement.

Please join us and learn more. Use http://www.tchat.io/rooms/hchlitss!

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Trying to Change the World for the Better: Meet Medivizor

“Medivizor’s vision is to improve the lives of people with serious medical conditions and those who care for them and to effectively medivizorapply software and the social web in the field of health for the betterment of humanity. This might sound like a lofty goal, and indeed, it is. We want to change the world for the better!”

As one satisfied patient, AnneMarie Ciccarella has pronounced, “Step Aside Dr. Google:  Enter Medivizor.” As the CEO of Medivizor, Tal Givoly describes, “Today, when people become sick, they often use the web to find information.  They find too much information.   Much of it, irrelevant. Much of it, not easy to understand and interpret.   Most frustrating [for them is]  finding something that seems hopeful, and wasting precious time with [their] doctor [only] to be disappointed.”

Within this dilemma, is Medivizor’s purpose. Medivizor provides medical and health information, vetted by physicians, to subscribers.  That information is personalized to their specific diagnosis  and delivered to them on an ongoing basis. Medivizor takes the futility out of the web search.

And the best part about it:  It’s a free service.

“It’s a subscription service. You sign up once, begin getting information from then on. That’s another key attribute,” relates COO Ronen Keinan. Ronen  Right now, the service supports breast cancer, prostate cancer, colorectal cancer, melanoma, and diabetes and is adding more diagnoses as they grow.  Even if the service doesn’t support your diagnosis now, “You can sign up now and put in your primary medical condition – and we’ll let you know when we add support for it,” Mr. Givoly states.

The first question you might ask is, “How are they doing this?”

Tal“We have a medical staff that’s overseen by our Chief Medical Officer.  Some review is automated and some human–physicians and PhD’s–that do peer-reviews, ” Mr. Givoly states.  Medivizor relies on content from PubMed.  “We strive to provide ONLY relevant information in words most can understand and act upon….The information is intended to provide value to the patient and or caregiver (and medical team). We develop a medical profile for the individual.  Then we semantically match new information according to that meta-data,” Mr. Givoly explains.

The health information provided is explanations of cutting-edge medical and scientific research, notifications of matching clinical trials,  lifestyle tips, community resources, and relevant treatment options. “Decisions of whether to include content is a medical team decision that gauges level of evidence and user interest ,” Mr. Keinan says. 

As Ms Ciccarella states, “A big part for me?  It’s interactive.  I let them know if information is helpful or not and why.”  And Medivizor respondsaacr to feedback.   

Medivizor’s formative team includes Tal Givoly, Chief Executive Officer.  Mr. Givoly was Chief Scientist of Amdocs (DOX), where he headed up innovation activities across the $3B company. Before that he held leadership positions in product management, software and product development. Ronen Keinan is their Chief Operating Officer. Keinan has 20 year of experience in high-tech and was most recently the Vice President of Portfolio Management at Nokia Siemens Networks (NSN).  Oren Fuerst, Ph.D., Chairman of the Board,  is a seasoned entrepreneur, investor, and author. Dr. Fuerst built, and continues to lead a number of companies focusing on medical devices and health informatics.  Prof. Steven Kaplan (MD) is the Chief Medical Officer. He is Chief of the Institute of Bladder and Prostate Health at Weill Cornell Medical College and also serves as Director of the Iris Cantor Men’s Health Center at New York Presbyterian Hospital.

The motivation for starting Medivizor comes from life experiences of its founders. “Each of the founders had a personal perspective and they knew each other over time and came together. For example, Oren Fuerst was a caregiver for his mother’s cancer and experienced the information problem first hand. Even though he was very knowledgeable and well-connected, it was just overwhelming and impossible to keep track.”  Mr. Givoly relates.  “Prof. Kaplan, a world-renowned doctor and researcher, has people coming in every day with irrelevant Google printouts.   And I saw good friends cope with their young child’s leukemia and what they had to go through in terms of medical research.   We got together and built the product/service/team to solve the big problem:  That medical information isn’t personalized.  That despite the enormous amount of information, finding ‘the right stuff’ is simply ineffective and inefficient.”

At this point, the start-up is a labor of love.  They are searching for ways to keep the service going but they are certain of one thing, “Medivizor is not intended for marketing,” Mr. Givoly states.  “There’s a lot of great information on web and  a lot of marketing.  Medivizor is not intended for marketing.” The founders are using three models to obtain some return on investment, first, “premium services to be introduced in future, second, licensing of software to medical professionals and third, referrals (clinical trials, treatment, etc.). But, business is not determining the information that is provided,” Mr. Givoly reiterates.

“What we provide is unique in many ways. First, is that it is truly personal: The user doesn’t “search” for information; they get information just relevant for them. We know enough about the person to do so. We sift through all the information and find what’s relevant, couple this with our medical team insights and the social web (crowdsourcing). We are HIPAA compliant and safeguard user data!” Mr. Keinan states.

“When I went to sign up,” says Summer Plum, a patient subscriber. “It immediately recognized Ehlers-Danlos (a rare genetic disorder characterized by extremely loose joints, fragile or stretchy skin, a genetic disorder) which is novel and nice.”  Ms. Ciccarella notes, “I use it for me and for my mom with metastatic breast cancer. It’s useful and helpful.  I am thrilled with the site…. ”

Making the content of journal articles accessible to everyone is a challenge.  “We aim for 10th grade English. We may personalize based on literacy in future. We take it down from, literally, Flesch-Kincaid grade levels of 18-22 down to 10. That’s a gap.”   To deal with this difficulty, they have added a “help box.”  Ms. Ciccarella remarks,  “There is a “helpful” box to interact back.. .if enough people said, ‘HUH?’ they would rewrite and resend information.  I have returned questions in the “helpful” box …. and got back a clarification of the information.”

“We intend it to be suitable for both the e-Patient and the average person. The balance is delicate, I admit. ” Mr. Givoly states. “However, data we’ve seen suggests that it does include ~90% of US adults.”

The company has a long list of conditions they are working to add.  “We’d like anybody coping with a serious or chronic medical condition to add Medivizor to their tools.   We believe strongly in being smart/engaged patients. Medivizor can help save time/effort and focus medical information checking.   Medivizor provides you info and ongoing updates specifically for your situation, as new things become available. If you want to know when we support a condition of interest… You can sign up and put in that primary medical condition – and we’ll let you know when we add support for it,” Mr. Givoly adds.

I can only say one thing: It’s not the same as anything out there. Clean interface and ongoing information.” says Ms. Ciccarella.  Dr. Gia Sison, a physician recently turned breast cancer patient agrees, “Once people try it, you truly appreciate its usefulness!  Just signed up. Nice website and easy to understand both from a doctor/patient point of view.” 

Patients can use the information and resources they receive from Medivizor to collaborate with  their local primary care physicians.  However, Medivizor doesn’t provide medical advice, nor does it replace a person’s medical team – it supports it.  Users can simply share what they get in Medivizor directly  with the ‘share with doctor’ feature. 

Ms. Plum says, It does take an immense amount of personal knowledge to be able to sort through all the information available [on the web]. ”  Mr. Givoly agrees, ” That’s one of the challenges we try to address: Simply what you need to know….We try to package that and we try to help build on knowledge.  Provide general knowledge and then become more specific. So it’s gradual.

Dr. Sison agrees, “In this world of medical information overload on the net it’s vital to have a one-stop hub for all (healthcare professionals/patients).”  Ms. Ciccarella states, “The site is FOR patients. Helps us be better members of our medical teams. We can ask the right questions and make best use of doctor’s time.”

Patient Advocate, Claudia Nichols states, “I see Medivizor as a clinical resource for my practice!”

 “We strive to provide as much transparency as we can.  Our mission is truly to make the world a better place by applying software and the social web for the betterment of humanity. We take great care to protect our user’s data and privacy.    We do not share personal information with others without explicit consent of the users. Best scientific evidence is always the prime consideration when sharing information with users. If there are controversial matters – we coach to reflect that.  If anything is ever sponsored, we would, obviously, make it very plain to see that.  Bottom line – we are trying to do good and avoid tarnishing our reputation. “

In the end, patient endorsements speak to Medivizor’s value.  As Ms Ciccarella states, “I can’t say enough about the service! “

Based on the twitter chat #HCHLITSS Health Communication, Health Literacy and Social Sciences

Bringing Back the Story: Wellbound Storytellers and Health Empowerment

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The Navajo Sugar Monster

Long ago the Holy People predicted that a monster would take over the Navajos.

Our mothers and fathers would change…No longer were man and woman together.

One after another this monster ate away their faces.

It gnawed away Navajo identity….Everything turned from light to dark….Words ceased to exist.

The Holy People begin to cry.

The Navajo language meets its end…Mouths would soon close entirely.

X marked the spot….Over the eyes and mouths of the people.

The Navajo were not human anymore.

They were beings who craved only one thing

It was not water or food…Nor prayer or traditions…Nor love or family.

The Holy People were right.

Sugar is our monster.

A killer claiming Navajo lives…With a craving that could never be satisfied

Who are these monsters?

Mom? Dad?  Where are the elders? Where is my family?  Who will save us?

It’s going to claim the next generation if things don’t change…

We must stand and make a change…Stand up and fight against this monster

For you…For your family,

Your mother, Your father, Your children

For your Nation.

by Chantelle Yazzie (A neo-traditional story published on Wellbound Storytellers.)

Stacy Braiuca is one of the Native Americans writing for Wellbound Storytellers.  “There are currently 11 ‘Wellbounders’ all over the country, all different Nations, ages, backgrounds.  We try to write about strengths and weaknesses in our journey.  Not only are we trying to be a group of leaders to start a movement of storytelling, but storytelling is a natural fit to health empowerment.”

Just a year old, The WellBound Storytellers “blog is specifically trying to use storytelling to empower people, ourselves and others, on our health journey.”  Indeed, storytelling is essential to the wellness of native people.  “We have always told stories to pass our values, lessons, and learning to the next generation,” Ms Braiuca relates.

Ms. Braiuca is a Clinical Social Worker and Public Health educator. She works full time as a Research Associate for thewpid-Photo-Mar-22-2012-941-PM Center for American Indian Community Health and Healthy Living Kansas at the University of Kansas Medical Center, working on research projects about cancer, obesity, and health literacy.  She is a member of the Citizen Potawatomi Nation (hence CPN).   According to the CPN website, “The CPN are Algonquian-speaking people who originally occupied the Great Lakes Region of the United States.  Originally the Potawatomi were part of the Three Fires Council made up of Potawatomi, Ojibwe and Odawa, collectively known as Anishnabek peoples.”

Staying connected to one’s heritage is important to health according to Ms. Braiuca.  “Citizen Potawatomi Nation has members globally. They have the first population representative legislative government of contemporary Indian Nations.  We live everywhere are all connected via …  CPN FaceBook pages and CPN website.”

“Native Peoples sharing their journey to wellness”is the tagline for the Wellbound Storytellers blog.  And the journey to wellness is definitely needed among Native People.

According to the Indian Health Service of the US HHS Fact sheets, native peoples have a lower life expectancy than all the races of the US.  The leading causes of deaths according to 2005-2007 data, are heart disease, cancer, unintentional injuries and diabetes.  Native Peoples have higher rates of death by alcoholism (552%), diabetes (182%) and unintentional injuries (138%) than other Americans.

Ms Braiuca points to history in explaining much of the health disparities that plague Native people.  “Native health is a concern in all health areas. Disparities are woven into [our] history [as a result of the] 500 years of Colonial policy debacle.”  The issue of trust in western medicine is key among native culture “for example smallpox blankets, commodity food, Indian Health Service, reservations, removal [and] because traditional healthcare [has been] taken away,” Ms. Braiuca recounts. In fact “diabetes, cancer, and loss of culture and [traditional] medicine and language are tightly woven,” she says.

Native American genetic make up was not designed for Western diet and cultural habits.  Diabetes is a major health problem among native people.  The reasons vary but include “lack of prevention, poor healthcare and commodities like flour and sugar and lard, used to make fry bread which is not a traditional food!”  Traditional foods are the “three sisters– corn, squash, beans– and wild rice, fish and wild game,” Ms Braiuca says.

Another risk factor for Native people is smoking.  “We have the highest rates of smoking of any population in the US, over 40%,” Ms. Braiuca states.  However she is clear that this problem is connected with the recreational use of commercial tobacco, not from traditional, sacred uses.

Because of the issues of mistrust, any prevention effort must be community based. It is “imperative to [have] buy in of the community… plus LONG relationship building,” she says.  Part of the problem is a lack of native specific research which is hindered by tribal sovereignty, health systems and issues of trust.  The Center for American Indian Community Health, where Ms. Braiuca works, is one of the few places in the country doing community based research with Native Americans.

The Wellbound Storytellers blog employs all kinds of technology “oral/audio, video, art,  and written” to get their message across.  Most of the stories are neo-traditional “as in tradition being born but also recalling traditional stories,” Ms. Braiuca clarifies.  This is because traditional healing stories are unique to particular nations and these stories can only be told by certain individuals, elders.  Lamsam-Teresa-1449-5x7-color-qty001

According to Teresa Lamsam, another Wellbound Storyteller, those specific  individuals have a responsibility for the story. “Most of the stories that would be relevant [to healing] are considered to have healing within the telling of them — which is what creates the responsibility for the person who carries the story.  The person who receives the story also has responsibility.  Usually, a ceremony must accompany the story.”

Bringing back the story to heal is the message of the Wellbound Storytellers.  “Storytelling is not just limited to the younger generation listening to the older one, it is perfectly appropriate to flip that script.”  And that is just what these storytellers are trying to do.

Reporters: Give ‘Em A Break

The people of Boston, like the marathoners, are resilient and resourceful. We cannot be broken by a cowardly act of terror. We will come back from this. Senator Elizabeth Warren

Patriot’s Day is a holiday in Massachusetts celebrating the anniversary of the April 19th Battle of Lexington and Concord during the American Revolution. It is celebrated on the 3rd Monday of April. My first experience of it was many years ago during my fellowship in Health Communication at Harvard.

This year I finally had the chance to see the running of the Boston Marathon. We went to see the elite wheelchair racers and the large pack of folks, many running for charities, at the corner of Washington and Commonwealth in Newton. This corner is right before one of the largest hills that runners face and lots of people cheered the racers to help them face the challenge.

We got home at 3 pm and found out via a phone call from family that the terrorist explosion had occurred at the finish line.

When you think about it, the person who planted those bombs wanted to hurt a lot of people –especially children and families. Children are out of school this week here in Massachusetts. Patriots Day is a work holiday and a time for families to be together. The terrorist/s wanted to hurt people who were cheering good people who were running for Tufts Medical Center and Fred’s Cancer Fund at Sloan Kettering and other charities. They wanted to hurt and maim the innocent.

And they did.

Sadly, the media has hounded the families of the three victims and seem to be hovering around those who are critically ill like vultures.

It is the continuing horror of this event. I request that the news media follow the ethics of the Golden Rule: “Do unto others as you would have them do unto you:…or your mother, father, daughter, son. Remember: “There but by the grace of God go I.”

From Outrage To Action: Dian (CJ) Corneliussen-James and METAvivor

“I started METAvivor out of outrage.”

Dian (CJ) Corneliussen-James Co-Founder of METAvivor Research and Support, Inc

Born from the outrage of four women, METAvivor Research and Support, Inc. is a non-profit with a purpose–To increase research funding for metastatic cancer.

Dian (CJ) Corneliussen-James  is one of those women.   A self-described shy child, Ms. Corneliussen-James  (or CJ as she likes to be called) is anything but retiring and reserved.  Raised CJby a progressive cause-oriented Pastor father and reserved Quaker mother, CJ got a taste of traveling as an exchange student in Germany 1968-9 and Rotary Fellow in Austria 1972-3.  After getting a masters degree, CJ joined the Air force in 1979 “to pay college loans.”  She stayed with the Air Force for 24 years.  “I had a great life– variety, travel, pay and promotions.”  During her time in the Air force she tracked and analyzed Soviet satellite activity, collected information against the Eastern Bloc, served as intelligence lead on the Joint Chiefs of Staff for the Somalia Conflict and resolved the cases of Americans lost during the Vietnam and First Gulf Wars.  In 2003 she retired as a Lieutenant Colonel and began a second career in the civil service as the Senior Intelligence Officer at the Defense Prisoner of War/Missing Personnel Office.

Three months after a clean mammogram she felt a lump in her breast.   Her world changed with the diagnosis of stage II breast cancer. . “Surgery, chemo, radiation, pills…Welcome to the Pink World,” CJ quips.   Her career was cut short with a subsequent diagnosis of systemic lupus and the spread of breast cancer to her lung – all in a period of 19 months.  She’s had a lobe of her lung removed as well as continuous chemotherapy since then. This year she had surgery for the collapsed remaining lung. “Recently a former HS teacher said I was the only one she knew who has been reincarnated several times in one life. “ CJ stated.

Although she retired, CJ didn’t stop working.  She turned her analytical mind, vast experience and understanding, to her disease and began to search for research on metastatic breast cancer (MBC).  What she found was a dearth of research on metastases of breast cancer and on metastases of all other cancers.

What are metastases?  People who have Stage IV cancer have metastatic disease.  Metastases means the spread of a cancer from the place of its origin, be that skin, breast, blood or lung, to other url-1organs throughout the body.  “The public doesn’t even know what mets is. Say you’re stage IV and they ask when will treatment end. The Answer: When I die, “ CJ explains.

“A few cancers kill without metastases. Ninety percent (90%) of  metastatic cancer patients die of metastases. One hundred percent (100%) of metastatic breast cancer patients die of metastases,” CJ states.

Why is there so little research on metastases?   CJ found that most of the funding from donations and taxes has gone to early detection, prevention and treatment.  “In the US only 2% of research funds goes to Stage 4 cancer….One study showed the American Cancer Society gave ALL stage IV cancers 2.3% of  its research budget in 2010. The Federal government gave 0.5% to stage IV cancers in 2005. “  The same is true for other organizations. “ACS, Komen, Avon, NBCC , ALL focus their funding on prevention and have NEVER defined CURE.”

Yet people are dying from metastases. “Prevention and treatment have failed to make a difference for most cancers.  Only lung and colon cancer have seen improvement…[with this type of funding.] “ CJ states.

CJ began making contacts, asking questions and collecting information.   Her quest led her to friendships and working relationships with well-known researchers and cancer advocates such as Danny R. Welch, Ph.D. and Clifton Leaf.  There are “Superb Stage 4 researchers and proposals.  But if [they are] funded at only 2%…they can’t do much with that, “ she says.

CJ’s physicians also sent other people with metastatic breast cancer to her for support.  She was shocked to find that virtually none of the support, research or activities that typify the very successful “pink” breast cancer movement extended to the metastatic breast cancer community. “People don’t like to think about stage IV. Too depressing. We’re in the closet…Breast Cancer events don’t address Metastatic Breast Cancer.  [These organizations] think it will dampen mood. No Metastatic Breast Cancer speakers, topics or literature. Metastatic Breast Cancer questions [are] avoided, “ CJ explains.    Metastatic cancer patients are not welcome at many support programs. “Newly diagnosed [MBC] patients not infrequently approach Breast Cancer groups for support.  Unfortunately, these groups often suggest to MBC patients that they are not welcome, or that they must not mention their diagnosis to the others for it would be too frightening for them in their fragile condition.  This can be devastating.”

However  CJ believes that Metastatic Breast Cancer patients are really better off with other metastatic patients.  “In all honesty,…only other MBC patients can provide true insight, advice and understanding.  Discussions concerning mastectomies, lumpectomies and getting through treatment to return to normal life are not helpful and only serve to remind the MBC patient that she has a much more difficult road ahead.”

In 2007 CJ officially established a local support program in Annapolis Maryland that within six months grew to 24 members.

Soon she was looking for ways to increase funding for metastatic breast cancer research.  “METAvivor was created to fill a critical gap in Awareness, Research and Support.  Many don’t realize stage 4  needs and the disparities in support and research.  Educating people is critical.”

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CJ and three other women who were part of the support group she had established in Annapolis created METAvivor in 2009.  “We had to be a nonprofit to raise funds.  The four of us followed the free non-profit checklist on Maryland’s state government site.  Our Goal was to do everything possible free or donated.”  And they achieved this:  METAvivor  is 100% volunteer and a 501c3.

Two of the four women who worked together to create METAvivor  died during its first year of existence.    “Patients are so devoted they work with us until weeks before death.  We would never ask or expect it, but they do.  [METAvivor is that] Critical…to them.”

One of the main problems with metastatic disease is finding the numbers.  “Numbers a HUGE issue. There is no code for Metastatic Breast Cancer. It is counted only if the person’s first diagnosis is stage IV.  There is [clear indicator] how many live with stage IV.   Others try to down the numbers. Stats are very hard to find.”  Yet even with people who are first diagnosed with stage IV cancer the figures are shocking, “One third of cancer patients die annually, most from metastases.  Stage 4 research needs one third of the research funds, not 2%.”

METAvivor expanded its support function and now helps people elsewhere establish their own support where programs are lacking. “The problem is that Stage 4 patients have unique needs.  They need dedicated Stage 4 SUPPORT.  We can combine with other Stage 4 cancer patients, but not with primary patients. “   Sadly there are only 40 support programs nationwide for MBC patients, ten of these in NY State.  “The vast majority of patients have nothing ,but MBC has far more than most stage4. It’s TRAGIC,” CJ states.

CJ and others at METAvivor are on a quest.  “For us this isn’t optional.  We are driven by a critical need and  a mission no one else does.  We can’t stop until we get proportionate research and support.”

CJ and METAvivor know that research on metastases in all cancers  is needed.  “Research for breast cancer does little to nothing for me. Research for stage IV anything DOES help me and all stage IV [cancer patients]. This is [the] critical point.  Progress in any stage IV cancer research helps other
stage IV cancers. We want stage IV research across board,” CJ states.  “This is a stage 4 problem…we need to rally the stage IV community of all cancers and have the healthy community help raise our voices … say enough already!  Help us promote 30% for 30%! They are welcome to 70% to use as they wish. No new money …need to redistribute.”

METAvivor created their ribbon in order to involve all metastatic cancer patients.  “Our Ribbon’s Ribbon_whitelinedblue/green base means stage IV. We hope other stage IV groups will use our base and replace pink with their color to show our common bond/cause.”

People with metastatic cancer need those who are not sick to speak up. “Everyone has challenges. I’m in remission and retired but help my 96year old mum and I have a husband newly diagnosed with cancer and I’m in ongoing treatment…

METAvivor Inc  is 60 percent patients and 40 percent not. All have challenges. Some live alone. Some are quite ill. Some are overworked. But all highly devoted,

We need more non-mets help pushing fairness for all terminal cancer.  It’s [healthy] people… that will help achieve parity in research.  Be vocal. Challenge organizations to increase research. “

To this end, METAvivor is starting an ambassador program.

“We will have teams nationwide, broken down into 11 regions, working on building awareness and promoting increased research for MBC and simultaneously for all stage IV cancer. …I am currently working with a very small team to build a comprehensive plan… In the meantime, if people wish to express their interest…, they are welcome to email their contact information and geographic location to me at cj@metavivor.org.

METAvivor has an extensive and growing awareness program with annual campaigns such as 30% for 30% (2011) and the Elephant in the Pink Room (2012).  It also offers donors the rare opportunity to donate exclusively toward metastatic breast cancer research and have 100% of their donation used toward that end.  METAvivor is in its fourth year of awarding annual metastatic breast cancer research grants and by the end of 2013 will have awarded more the one-half million dollars.  CJ served four years as President of METAvivor, stepping down this year to have more time to focus on her area of passion – advocacy.  She now serves as METAvivor’s first dedicated Director of Advocacy.

For more information please read  CJ’s post on 2% research http://t.co/KMdy1xO6o0 and her post on 30 for 30: http://t.co/0qCJ71tKPq

Based on March 21, 2013 transcript of #HCHLITSS twitter chat.

How-to Health Communication: Crisis Public Relations and the Susan G. Komen For the Cure Foundation

Crisis communication has to be a part of any organization’s make-up.  Why? The same reason the words “I’m sorry” are part of human vocabulary:  humans make mistakes.  Being able to effectively deal with a blunder,  can tell a lot about an organization.

So, what can be learned about the Susan G. Komen For the Cure Foundation from its continuing difficulties since February 2012?  A lot.

Historically, Komen has had positive press: after all, its creation is based one woman’s promise to her dying sister.  So it isn’t surprising that in January 2010 the Harris Interactive Survey ranking of 79 non-profits brand along a number of criteria,  Komen ranked # 2 in Trust and #1 in Brand Equity (familiarity and quality).  It also ranked as the #1 non-profit to which people are most likely to donate.

Yet, in December, 2011 executives at Komen decided that the Foundation would not be funding cancer screening exams at Planned Parenthood.  In March, a month after the story broke, Harris International’s press release described a huge drop in Brand Equity for SGK: a fall from #1 to #56. 

Without a crisis management strategy, the Komen Foundation has stumbled  for months. Why?  Summing up, it is because the Foundation has not followed the five steps that are basic to public relations crisis communication.

STEP 1:  The first step is to be prompt and address the situation immediately.  Once the story broke, Komen should have addressed their reasoning for their decision.  Yet in this case, when the news broke via the Associated Press, Planned Parenthood used social media, Facebook, email and twitter to spread the news.   In contrast, Komen did nothing.  Planned Parenthood framed the story.

STEP 2:  Another step in crisis public relations is to be informative.  When the rationale for the decision was not fully explained, rumors proliferated. After letting Planned Parenthood frame the initial story, a public outcry occurred over the decision (with protests from its own affiliates) and the Foundation reversed its decision.  The explanation that Komen gave for their first decision was that they wanted to avoid funding organizations that are under investigation by authorities.  Yet Komen’s continued funding Penn State’s Milton S. Hershey Medical Center to the tune of $7.5 million despite also being under investigation by local, state and federal investigations.

STEP 3: This inconsistency calls attention to the third step in crisis management:  be honest with the public.  As the above illustrates there may be a history of problems with Komen’s communication strategy along these lines.

As Rachel Moro stated on her blog

On their website, Komen clearly states that is their mission “to end breast cancer forever”.  This mission ties in nicely with the organization’s recent name change to Susan G. Komen for the Cure®. Straight-forward. For. The. Cure.  What does this statement mean?  To anyone reading it or hearing it, the mission “to end breast cancer forever” and to be “for the cure” would mean there would be a significant amount of money going from the Komen Foundation to research to actually end it forever and find a cure.

Moro, an accountant, did an analysis on The Komen Foundation’s public records.  She states that “Komen’s total “Net Public Support and Revenue”for 1982-2010 would total somewhere in the order of $2.1 billion.  Only $491 million of that has been spent directly on research.  That means that $1.6 billion has been spent on other things.”  What has it been spent on?

Komen’s records state that between 2004 to 2009, Komen allocated a total of $1.54 Billion of “Net Public Support and Revenue” to the following categories: Education 36%; Research 25%, Administration and Fundraising Expenses 22%; Screening 11%, and Treatment 6%.  As can be clearly seen similar amounts of funding were spent on administration and fundraising as on research.

So there is an important message that anyone who donates to the Susan G. Komen Foundation For the Cure needs to know. As Andrea Rader from Komen stated, finding a cure doesn’t mean actually doing research,”Research is just one piece of delivering cures for cancer. Education is critical: even today, many women don’t know they’re at risk for breast cancer, or they continue to believe myths like underwire bras cause cancer (they don’t).”  Komen’s definition of “for the cure” does not mean doing research.

STEPS 4 and STEPS 5:  Steps four and five in public relations crisis management go hand-in-hand. Step four is showing the public you care.  Step five is maintaining two-way communication, that is, listening to the public.  There has been a vocal group of women with breast cancer who have been trying to get the Komen Foundation’s attention. One blogger and journalist, Brenda Coffee, was able to ask a spokesperson, Leslie Aun, the National Director of Marketing and Communication for Komen for the Cure,  to post on her blog.  The requirement of that posting opportunity was for Aun to respond to the many concerns of the breast cancer blogging community, for example, the partnerships Komen has made with brands like Mike’s Hard Lemonade (alcohol consumption associated with breast cancer) or the selling of “Promise Me” a perfume with carcinogenic ingredients. Aun was supposed to respond to comments to her post and thus provide a mechanism of communication.  Aun wrote her post.   According to Coffee, it was a defense of the Komen Foundation.  Aun did not respond to any of the comments that were made to her post.

So the Susan G. Komen Foundation For the Cure has been going through some significant personnel shifts over the past few months.  But is this enough?  Susan G. Komen was a young woman who had an extremely aggressive breast cancer that metastasized.   The Foundation that is named after her needs to remember that this terrible tragedy of her loss is being repeated.  Breast cancer is not being cured.

In those who have metastases, it is a life sentence to constant invasive, painful medical treatment and eventual death. Moro  poignantly wrote, “For me and the people I know who are in treatment for breast cancer, we understand a “cure” for our disease to mean that we will be completely healed and never have to worry about breast cancer invading our lives ever again. “  This is poignant since she died of breast cancer in February 2012, close to the time when all of the decisions about Planned Parenthood broke in the press.

The case of the Susan G. Komen Foundation For the Cure is not over.  There is time to work through this crisis with openness, honesty, information, and two-way communication with those who have breast cancer and their loved ones.  The officials leading Komen just need to take a few steps.

 

 

 

Responding to Komen’s New Awareness

MBNCBuzz just posted this advertisement by the Komen Foundation.  It is the first time that the Komen Foundation has acknowledged metastatic breast cancer, Stage IV, in a marketing campaign.

The irony that Susan Komen died of metastatic breast cancer is not lost on those who live with it.   Recurrences of breast cancer are not uncommon.  Close to one-third of the women considered “cured” of breast cancer will suffer from a spread of the cancer called metastases.  This can happen many years after their initial diagnosis.  Over 90% of breast cancer deaths are due to the spread of the disease to other parts of the body, such as bone, lungs, liver and brain.  Although there is no exact numbers collected, a rough estimate is that around 162,000 women are living with metastatic breast cancer in the United States.  There is no information collected on historic trends.  Treatments to prevent metastases do not exist.  Treatment to eradicate metastases do not exist.

There has been much discussion in the cyber world of the foibles of the Komen Foundation.  One of the best descriptions of the use of monies by Komen was written by an financial analyst Rachel Moro in her blog The Cancer Culture Chronicles.  She explains in pie charts and graphs the intricacies of Komen’s spending and reveals how in 2010 only $66 million to research in a year when its total revenues were $389 million.

Those who live with breast cancer wonder where all the money that has been raised has gone.  They are concerned that funding for research to cure breast cancer has not been directed at what actually kills breast cancer patients, metastases.  So many loved ones have been taken by metastatic breast cancer.  One of those who has been lost is Rachel Moro.

This advertisement does not come close to the whole story of Bridget Spence’s life with breast cancer.  Her most recent post on My Big Girl Pants is a poignant reminder of the suffering experienced by those who have metastatic disease.  As of August 28, 2012 Bridget’s cancer has spread.  She is not able to be a part of a clinical trial.

The National Breast Cancer Coalition has set the year 2020 as the end of breast cancer deadline.  The organization has put together a Blue Print  for the End of Breast Cancer.  The Coalition is bringing together researchers in a series of summits.  Suggestions for research provided by just one of the summits include developing technologies to detect the first signs of metastasis . Another suggestion is to do longitudinal cohort study, to follow women from the time of diagnosis, comparing those who develop distant metastases with those who do not.  A third idea is to do this in conjunction with tissue collection and genome sampling.

Funds from the Komen Foundation could be used for any of these ideas.  As Ginny Knackmuhs stated in her post the best copy for this marketing campaign would be

“The true source of HOPE for metastatic disease is research. That’s why we at Komen are dramatically increasing funding for research into the cause of metastases (the spread of cancer) to stop it in its tracks and save the lives of the estimated 155,000 women and men living with metastatic or stage IV breast cancer in the US, as well as the lives of 30% of early stage survivors who will have metastatic recurrences in the future.”

Please look at all the links to blogs of women who are trying to make a difference.  Perhaps putting more pressure on the Komen Foundation to partner with NBCC or communicate with MBCC is in order.  Ask yourself what you can do to be a part of the solution.  This effort to save those with breast cancer needs ideas and action.

Cancer Language: Erasing Reality

culture:  the integrated pattern of human behavior that includes thought, speech, action, and artifacts and depends upon the human capacity for learning and transmitting knowledge to succeeding generations  Merriam-Websters.

The first  Sunday in June is set aside as National Cancer Survivorship Day.

It is described on the website as “an annual, worldwide Celebration of Life,” as “a day to unite together in a show of solidarity of collective cancer survivorship.”

Yet how do people who have cancer feel about this day?  A large number of bloggers have answered that

question.  Yvonne Watterson of Phoenix Arizona is one of those bloggers. She is part of a large cyber community, bloggers and twitter activists who tweet with the hashtag #bcsm.  “I have been educated by amazing bloggers. I knew nothing of metastatic cancer until #bcsm.”

With no family history, negatives on all her mammograms, and a love for fruits, vegetables and exercise, Yvonne was caught off guard by her diagnosis of breast cancer on November 11, 2011.  As she states, “I used to complain about the pace of life as a woman trying to play equally well the parts of mother, wife, friend, and boss.”   Not anymore.  And since that day she has written about her experience on “Time to Consider the Lilies.”

One of her fellow bloggers is Marie Ennis-O’Conner.   In Journeying Beyond Breast Cancer  The stimulus for this posting was the media’s coverage of Robin Gibbs death  ‘Robin Gibbs lost his long battle with cancer.’ In Why Words Matter,  she asked other bloggers the question, “Do you feel the exclusivity of the term survivor focuses attention upon those who are living, essentially erasing those who are dying from the disease?”    Yvonne took up the challenge to try to write about the language of cancer.

These women with breast cancer are trying to bring awareness that the terms, “battle,” “winning,” and “survivor” are all the part of the language of the cancer culture.  As Yvonne states, “Language is inextricably tied to culture,

and a definite cancer culture has evolved with a language all its own…There are so many messages out there suggesting that perhaps I chose to take on a battle and then did something to defeat an opponent.”  One of the most unsettling aspects of the language of this culture is the exclusion that so many feel.

“Those who are dying or have died are described as ‘losing’…  I don’t think we can really choose not to be victimized by cancer. It’s an unexpected assault, defying explanation.”

Yvonne believes the media treats breast cancer differently.  “…Breast cancer…has been sanitized by [the] media.  Too many pink euphemisms, myths and war metaphors are attached to cancer.  Is this a concerted effort to conceal the reality of it?”  Yvonne asks.

“I almost cried when I read Marie’s words about [erasing those who are dying],” says Yvonne. “It reminds me of a post I discovered by someone identified as Kelly K. Here it is:

“With no family history, no positive genes, I was diagnosed with stage III lobular triple positive breast cancer at 29 and mets [metastases] at 30. That year my oncologist practice selected me to be honored at a Komen luncheon. I spent a few hours …being interviewed for a video..[Komen] do[es] about the honorees’ breast cancer story…. Komen edited out every reference to my mets in the video….If that isn’t pink washing, I don’t know what is…”

Setting aside a day for “survivors” may seem innocuous to some but not for many in the breast cancer blogging community.    As Yvonne points out,  it “seems so insensitive and disrespectful to those who have been killed by the disease or those who are unable to live without being shackled to it.” For clarification Yvonne explained that the word “’Survivor’ …seems to focus on a stage of the disease that is more ‘socially acceptable.’ The often harrowing stories of those who are living with metastatic breast cancer are rarely publicized by mainstream media.”

In addition to erasing the fact that breast cancer spreads in 30% of those who are diagnosed, integrated in the culture of breast cancer is  “a wholly dreadful expectation that you should be more cheerful if you got the ‘good’ kind of cancer.”  Likewise guilt is part of the cancer culture.  “‘Prevention’ is wrapped up with ‘surviving’ and tends to make me think I could have done something to prevent the diagnosis.”

Somehow those with cancer must be like the contestants on the reality show “Survivor.”  They must outwit, outplay and outlast cancer.  Second guessing themselves is the fate of those living with this cancer culture.  “I  am still indignant about cancer showing up in my life and I am afraid of it progressing. Before the diagnosis, I hadn’t given it a second thought … it was the thing that happened to other people, perhaps women who missed their mammograms or who had a family history, but not to me. Why me? And so I go back to thinking I may have caused it,  which I know makes no sense whatsoever, but I can’t help it.”

So what word does Yvonne believe encompasses why one person has cancer and another doesn’t or why one person’s cancer spreads and another’s doesn’t.  “I don’t know the “right word” for those of us ensnared in the complexity of  cancer. But it seems more to do with ‘luck.'”

In her post,“he not busy being born is busy dying,”  Yvonne draws parrallels between avoiding the reality of cancer and escaping the “troubles” in Northern Ireland.  “I relate my experience with cancer to growing up in Northern Ireland. We didn’t live in fear every minute but knew we were lucky.’Devices of Detachment’ by Damian Gorman explores how Northern Ireland’s people distanced themselves from

junecaldwell.wordpress.com

violence. Seems we do same with cancer.”

I’ve come to point the finger
I’m rounding on my own
The decent cagey people
I count myself among …
We are like rows of idle hands
We are like lost or mislaid plans
We’re working under cover
We’re making in our homes
Devices of detachment
As dangerous as bombs.

#BCSM and the blogger community have been a lifeline for Yvonne.  “Were it not for this online community, I know I would be quite lost in the culture of breast cancer.”

There she has support and a place free of cancer culture expectations,  “I am so grateful for the solidarity and the safety I have found within the blogging community.  I think we all cry out ‘Why?’ and our collective attempt to see that this question is answered is powerful.  I believe we are unified in our search for answers to questions we are afraid to ask within a world that seems to ‘celebrate’ those who drew the long straw… But, for me personally, saying I survived cancer would be like saying I survived growing up in Northern Ireland. I would never say that. I would say that I was just luckier than others.”

Consider the lilies, how they grow: they neither toil nor spin; but I tell you, not even Solomon in all his glory clothed himself like one of these.”  (Luke 12: 27)

This is an incredibly well written commentary on the language of cancer. Yvonne brings us round to face our society’s efforts through the “language of detachment” to make those with cancer feel like “the other” A must read….

considering the lilies

“I read the news today, oh boy . . .” and prompted by Marie’s questions: who are cancer survivors and is it really necessary to celebrate survivorship on the first Sunday of June, I began yet another interminable trek through the unfiltered Internet. I found no answers for Marie. Just more questions. Admittedly, before today, I was completely unaware that such a “treasured worldwide celebration of life” was on the calendar and has been for twenty-five years. I wonder would I have been any the wiser had I not been diagnosed myself. So who is a survivor, and who do I think I am? At best, I am ambivalent. According to the National Cancer Survivors Day website:

a “survivor” as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. National Cancer Survivors Day affords your community an opportunity to demonstrate…

View original post 1,191 more words

Awareness Months

In Action:  Beyond Awareness I broached the subject of Awareness Months.  Because there is some confusion, I am going to discuss the Transtheoretical Model to clarify.

Prochaska, Norcross, and DiClemente developed the Transtheoretical Model.  It is used extensively in developing behavioral change programs for individuals.  The model describes the series of stages that an individual goes through in the process of change.

Precontemplation:  This is the first stage.  It is when the individual is unaware or underaware of their problems.     There is no intention of changing behavior.

Contemplation:  The second stage is contemplation; the person is aware that a problem exists and is thinking about it.  They have not made any commitment to take action.

Preparation:  Some behaviorists parcel out this stage into 2 parts.  First, the individual  intends to take action in the next month.  Second, they have made a commitment to do so.

Action:  This is the stage where the individual makes overt behavioral changes.  Modifications in behavior, environment or experiences occur.

Maintenance:  During this stage, the person works to prevent a relapse.  The gains achieved during the action period are integrated into their life.

Relapse:  Unfortunately, there is the opportunity for relapse.  Those who have relapsed may move into the preparation stage again or remain relapsed.

One of the most important features of this model is that it is all about the individual–moving the individual along a path toward change.

What does this change model have to do with Awareness Months?

Awareness Months assume that everyone who is receiving information is in the precontemplation stage.  They assume that all individuals being targeted by the campaign are unaware or underaware of the disorder/disease.   This is not the case.

When measuring the impact of an awareness campaign, pre-test/post-test surveys are done. The people who didn’t know anything about the disease/disorder or the material in the campaign (found in pre-test) are asked if they learned anything during the campaign.  If there is a change in knowledge among those people, the campaign can be termed “successful.”  There can also be questions about intent to do certain actions that the campaign promotes or even checks to see if actions actually occurred.  {An example of an effective campaign among those with low health literacy can be found here.}

What happens if an Awareness Month is only about letting people know how to determine if they or their loved one has a disorder?  Or what if an Awareness Month is only about preventing an individual from getting a disorder?

If the focus is on preventing the disorder, isn’t there an unintentional stigma “out there” for those who have the disorder?   It is as if  having the disorder is something that you could have controlled/prevented.  In most cases, this is not true.  Genetics plays a significant role in our lives.  The environment that we are surrounded by, pollutions or toxins we do not know about, impact us from babyhood.  The interaction between our genes and our environment can result in diseases and disorders.  Is that the fault of the individual?

People with the disease or disorder and/or their caregivers are fully aware.

Awareness Months that focus only on prevention or only on determining if an individual has a disorder leaves out people who have the disorder.  It doesn’t make anyone aware of what it is like living with the disorder nor does it help those dealing with that reality.  It doesn’t make anyone aware of the financial burden of the disorder; or the incredible efforts made by caregivers on behalf of those who have the disorder.  

So, where do you think change is needed?

Action: Beyond Awareness

In the 80’s and 90’s I watched public broadcasting shows and tired of the environmental documentaries.

Why?

Because the documentaries left me depressed.  All the terrible changes were and still are occurring.  Man wasn’t sharing the world but dominating it.  I was made aware but left hopeless with every documentary because there were no actions I could take to help.  The documentaries brought me to awareness, but then stopped there.

I feel the same way about the slew of Awareness campaigns.  They are all the rage.

Why do we just “do” Awareness?

Because it’s the easiest type of campaign to create and to document that some type of “change” has occurred.

So there are months or weeks or days devoted to “Breast Cancer Awareness” “Pancreatic Cancer Awareness””Autism Awareness” “Mental Health Awareness” ad infinitum.

A truly positive aspect of these campaigns is the impact on acceptability.  People can bring up the word cancer in conversation,  mental health and illness is being discussed.

So what is wrong with all this “awareness”?

There are campaigns that are outdated.  An example is that  early detection via mammography leads to a cure for breast cancer.  First, those who have been diagnosed, no matter the stage, can have a recurrence.  Metastatic breast cancer is the reality for one third of those diagnosed with breast cancer.  Another fact that is not being shared by those in the Awareness business is that mammograms may not be enough to find women with dense breasts need to be notified that mammograms are not the best tools to find the lumps.  So women getting mammograms are getting false hope with the yearly all-clear.

Another example among families living with autism is lack of support for the family…the financial burden…the constant observation that must be maintained in the school system to assure care.  After graduation from high school, how does the adult child function in society?

Awareness campaigns seem to just touch the surface of a problem but do not address the nitty-gritty of those who are experiencing life fully.

And there is still the stigma that people with mental illness, metastatic disease, disabilities face?

How do those who are experiencing pancreatic cancer, breast cancer, autism, feel about all this “Awareness”?

I’m sure there comes a time when they say, “Enough already.”

Begin With the End In Mind: Let Evaluation Lead

Nothing says success better than provable results! So it is easy to see why the folks at Health Literacy Wisconsin are smiling from ear to ear. This past fall they put together a winning health communication campaign by sticking with the fundamentals: they did their research. Erin Aagesen, MS, MSPH, the Health Literacy Coordinator at Health Literacy Wisconsin, a division of Wisconsin Literacy, Inc., joined the Health Communication, Health Literacy and Social Sciences tweetchat to explain their process. Erin manages statewide health literacy interventions in partnership with Wisconsin Literacy’s 63 member literacy agencies, community-based agencies and health care organizations throughout Wisconsin. The plain language health communication campaign, ‘Let’s Talk about Flu’ was conducted this past fall and winter of 2011-2012. During this short timeframe, 53 workshops served 921 adults with low health literacy. Funding and support came from Anthem BCBS and Walgreens and resulted in a lesson book, a 1-hour workshop and flu vaccine vouchers. According to Erin, a key to their success was “making the information relevant to participants’ lives.” Another vital component to success was delivering workshops in “trusted settings where people already live, work, study and socialize.” “Most participants were adults from our 63 member literacy agencies, who are reading below the 5th grade level. We also worked with populations in which there is generally a large overlap with low literacy, including [the] homeless.” Community based organizations often take shortcuts to save time and money. Pre-testing campaign content is often left out. In this case, Health Literacy Wisconsin didn’t skip this important step, they “pre-tested our lesson book with physicians, adult learners and adult literacy program directors. This was an essential step; we learned a great deal and revised our program and materials based on this feedback. We’re all rushed, but I think scheduling time for feedback and revision upfront saved us time in the long run.” “You have to prioritize. We were successful because we made some decisions about what was crucial data and what was not.” All their stakeholders were gathered together prior to developing their evaluation plan. And they followed the crucial advice to “begin with the end in mind!” By taking that advice, the results were worth sharing. With an 85% completion rate of the pre- and post-tests they found that flu knowledge increased from 56% to 83%. The participants intention of getting the flu shot increased from 74% to 83% and 42% obtained the flu shot (tracked through voucher system provided by Walgreens). The University of Wisconsin Extension Cooperative Extension pamphlet provided Erin and her colleagues with the tools and the self-confidence to do it right. As Erin assures other community based organizations, “it’s OK not to be research experts. ‘There is no blueprint or recipe for conducting a good evaluation.’ Make it work for you!” For further information check out Erin’s tweetchat and the University of Wisconsin Extension Cooperative Extension evaluation tools, especially their booklet.

Bullying and TV

Learning would be exceedingly laborious, not to mention hazardous, if people had to rely solely on the effects of their own actions to inform them what to do. Fortunately, most human behavior is learned observationally through modeling: from observing others one forms an idea of how new behaviors are performed, and on later occasions this coded information serves as a guide for action.”
-Albert Bandura, Social Learning Theory, 1977

I became aware of this show when I found my son watching a portion before I intervened.  I am not interested in promoting this type of programming but have placed a example of what I am talking about here.  I found the shortest clip I could find for illustration.  Bullying by physical intimidation occurred earlier in the program before this clip.

There are so many examples of this type of program.  For example, Disney had a cartoon called “Recess” that has been banned from our house.  In it, characters are verbally abusive to each other.

It’s been about 35 years since Bandura conducted his Bobo doll experiments.  In 1977,  Bandura explained observational learning that occurs via television with his Social Learning Theory.   Although his theory recognizes that learning the behavior through observation doesn’t  necessarily mean that the behavior will be reproduced, there is a huge body of research that confirms the negative impact on children and adults of observing abusive behavior.

SO, my question for those who produce this type of “children’s programming” is, why?  Why do you keep producing programs showing intimidation, stereotyping and bullying?  Are you unaware of the bullying epidemic?

Every day, 160,000 students skip school because they are afraid they will be bullied.

Several factors increase the risk of a child being bullied.  These include illness or disability, passivity, social phobia, agoraphobia, and higher levels and expression of general anxiety. Teenagers who are gay are often subjected to such intense bullying that they do not receive an adequate education.  Adults who remembered being bullied show low self-esteem and depression.

Does anyone else see the stereotypes portrayed in this program?  The effeminate male with the falsetto voice is clumsy, has few friends and is not admirable.  He is victimized by a bully, the larger male. 

When people wonder why there is such a large increase in bullying in the United States, I suggest they look at today’s line-up of television programs and stop buying the products that advertise on these shows.  Maybe that will get the point across…”we’re mad as Hell and we’re not going to take it anymore!”


The Power of Play, Part 2

Children will put in over 10,000 hours of video gaming before the age of 21.  How do the video game producers keep people playing?  Can health communicators harness the power of gaming by applying game mechanics to our campaigns?

These two questions have been nagging at me and I have found some answers.   Following up on “The Power of Play” blogpost, this post will explore gamification (applying game psychology to non game environments) further.

Why do we keep coming back to games and spending hours acquiring points?

Games are created from the ground up to engage us.  They are make believe.  Game producers create an experience.  The best video games are created around story that is meaningful to the player.  Saving the world, or at least the environment created by the producer, is the overarching goal of many video games.

Mastery is the experience of being competent , of achieving something.  This experience is at the core of what makes any good game fun and engaging.  The producers of video games also create a rule system to master.  There is a clear overarching long term goal and what is called a structured flow of nested goals.  For example, the long term goal is to save the world, a medium term goal is to kill the monster, to do that you need to obtain coins so a short term goal is to collect 5 coins.  Mastery is fun and it is addictive.  We crave learning: overcoming obstacles and then succeeding.  Joy lies in the tension between a risky challenge and the successful resolution of the challenge.

And this leads to a discussion of flow…Does the game have flow?  Flow means that it is neither under-challenging or over-challenging.  If the game is too easy the player becomes bored.  If it is too hard, the player experiences anxiety and frustration.

One of the tricks is to have frequent easy challenges that allow the player to savor their mastery but also have sudden spikes in difficulty.  The goals that are created need to be structured so that at each level it gets a little bit harder to reach the next level—for example, the player needs to earn more points to reach the next level  Another part of the creation of a game is to provide lots and lots of positive feedback when mastery occurs.

When creating a game, knowledge of your users is critical.  Games are tested and prototyped and retested.  Finally, successful game producers help us feel that we are playing rather than working.  Working is something that we are forced to do; playing is something we choose to do voluntarily.

One of the things that keeps us playing is that they aren’t reality.  They are make-believe.

Yet our vigor, our fitness, our physical condition is our reality.  A person’s body and a person’s ability to function in the world are all reality.  Health is reality:  seeking good health or increasing good health or motivating healthy behaviors are all real world endeavors.    And games mimic reality… as we play our games we are always looking for points to increase our hero’s health so that s/he doesn’t die and we don’t lose.

I believe that this is where a game creator who is interested in improving health could plug their behavioral messages.  When the player loses health, opportunities that are real world oriented, could be implemented to gain it back.  The most important part is that this needs to be tightly integrated in the “make-believe,” bringing a player back into reality makes educational or health games preachy

Again, incorporating research into the creation of a game is critical, test and retest to determine what your players want in a game will make it a successful and fun experience. Losing play means you lose your players– the strength of games is the power of play.

The Power of Play

Why do gamers spend hours amassing points for rewards that don’t really exist?  

Because games are fun.    What does this have to do with health communications?  Health communicators are trying to use game mechanics to hook people into doing things that will improve their health.  That’s right:   instead of being preachy, there is an effort afoot to make losing weight or increasing physical activity enjoyable.  By coupling a system of incentives with any number of efforts to improve health , health communicators hope to make doing a new healthy behavior fun and “addictive.”  Getting people to begin a new health behavior is difficult…that’s where the fun comes in.  Making it ‘addictive’ is critical because one of the major problems for any behavior change initiative is maintenance:, that is,  how can we find a way to keep people from backsliding, losing their momentum and quitting the behavior? Gamification is the new buzz word.  Why is gamification so fashionable?  It makes sense.  Let’s look at human beings.  According to economists, we are loss averse, favor immediate gratification and are overly optimistic about the future.  What this means is that the risk-oriented messages that are part of traditional health interventions really don’t convey.  Investing in your future good health or relating present behaviors to the future just doesn’t have as much impact as the immediate rewards of the behavior.  For example, even though you know smoking that cigarette can cause cancer in the future, you still smoke it because it tastes great with your first cup of coffee. According to health game aficionados, since people are more interested in reward in the present than what will happen in the distant future, communicators need to think out of the box.  This is where the structure and reward system of games comes in. With games you can invent immediate gratifications for behavior change, you can offset the configuration of time of action and payback around desirable health behaviors.   Here are some ideas to keep in mind when making a behavioral intervention, at ,for example, a workplace, into a game. The first is KISS…keep it simple means choosing one task or behavior and focusing on that.  Second, it is important to find out the key motivators for the audience. What can you do to integrate their motivators into the game? Relatedness, or an individual’s need to feel connected socially or to a group is a powerful tool that is used.  This is also related to a person feeling valued by things outside his or her self.
Third, incorporate the opportunity to work together if there is a desire.  The group size is important, apparently 8 is the magic number to get things to happen.Fourth, allow people to advance through levels and acquire points as individuals and as teams.  Fifth, use social and monetary equivalent rewards. Be sure to reward based on information on motivations.Sixth, be creative and use narrative themes to keep interest. Finally, provide rewards/incentives at regular intervals but then add to the game some surprise rewards.  Surprises work and keep people interested.

An innovative use of game mechanics is the Biggest Loser Minnesota Challenge.  The Alliance for a Healthier Minnesota partnered with RedBrick a company located in Minnesota to create the game. More than 22,000 Minnesotans participated in this statewide health program.  Altogether they lost 75,000 pounds. Now that’s a powerplay!

Post Three–Bringing Targeting, Tailoring and Engagement Together

Ok…the first post in this series called Targeting versus Tailoring describes the difference between the two.  To summarize, a targeted message is created for a specific group of people.  A tailored message is directed to one individual, created specifically for that one person.  Both strategies of reaching the audience require formative research. Post two is called Engagement…making it relevant. As one commenter notes, targeting has been done in the advertising world for many years.Reaching an individual through tailoring is comparatively new.Research that has been done on tailoring has been in phases.The first phase compared tailored messages to nontailored messages.This research, conducted in the 90’s, consistently showed that using tailored messages resulted in greater recall of the information.The messages were more carefully read and believed to be more relevant than nontailored messages.Positive behavioral change was documented. Another phase of research examines the aspects of tailoring, like message source or cultural variables.  In one study in African American churches, message source was tested because formative research had  revealed much distrust of research. yet confidence in the Bible and scripture to provide health guidance.  In the study, the tailored communications were either endorsed by the church pastor or by nutrition experts.  Those who received the pastor sourced messages thought them more credible than those endorsed by the nutrition experts and pastor endorsed recipients had greater intention of modifying their health behavior. Okay, so now how do we use tailored communications?  Although the results of intervening at the individual level are impressive,  people do not live in a vacuum.  Indeed, sickness is not a result of personal failure.  Use a multi-level intervention, one that takes into account social networks social norms, and environmental factors, for example.  Although more complex to conceptualize and execute, multi-component health promotion interventions are more likely to result in lasting behavior change. Next post…gamification of health interventions

Part Two: Engagement…or how to make it matter

For a long time cognitive scientists have been studying how we receive and process messages.   Petty and Cacioppo are the big names in this area of study, coming up with the Elaboration Likelihood Model or ELM to describe what they observed.  In a nutshell they found that we process messages in two ways, via  central or  peripheral processing.  As health communicators our goal is to engage indepth or central processing.  When people have little interest in a message, they tend to process it peripherally.  When processing peripherally, they don’t think about the arguments in the message but rather they  use cues like attractiveness, reputation or credibility to guide their decision to perform a behavior.  Alternatively, central processing is energy consuming.  It is only engaged in when a message is  very important and relevant to the person and when the person has the intellectual or technical ability to process a message centrally.    Processing centrally requires careful listening and evaluation of message content.  Whenever possible you want to promote central processing.   When you’ve thought about an issue and made a decision to perform a recommended behavior your’re more committed to really doing it.   Central processing is more likely to lead to long-term and stable change.

One of the best ways to engage the central processing route is to make your message relevant to the audience.  Tailoring achieves relevance. Studies have found that compared to non-tailored messages, tailored messages are more likely to be read and remembered, rated as attention getting, saved and discussed with others and perceived as personally relevant. Tailored messages are patient-centered.  Patient-centered messages are associated with better adherence to treatment than are topic-centered messages.  In particular, they can enhance self-efficacy, or the perceived ability to complete a specific task.Here is an example to illustrate the tailoring process.   Suppose we were to develop tailored messages to encourage an adult female to quit smoking, an interview or assessment survey would be used to query her about her life to better understand her smoking behavior.  The assessment would find that her name is Shelia Shephard, a cashier at a supermarket.  She identifies herself as an African American; she is 43 years old and has been smoking since she was 14.  Her smoking is done to relieve stress.  She has tried to quit before but has been unsuccessful.  She wants to try to quit again but can’t afford nicotine alternatives that can help her quit.  She socializes with other smokers during breaks.  Her main barrier to quitting is low self-esteem after having been previously unsuccessful in quitting; she believes that she will not reduce her risk of cancer by quitting.  A tailored message designer might create a message addressing her by name, acknowledging her long-time identification as a smoker and providing her feedback on ways to reduce stress without smoking.  The message would address her low self-esteem by providing supportive messaging to increase self-esteem.  It might provide her with coupons for nicotine gums and include a testimonial from a cashier who has quit.

The pace of interactivity has accelerated.   The opportunities for using tailoring have moved from print to Web to Blackberries.  Connection is just a text message away.  With the advent of tracking devices that can input data for real-time monitoring, the possibility of tailored texting to support behavioral change is not a pipe dream.  It is reality.  And that’s not all folks…stay tuned for more…

Part One: Targeting and Tailoring Messages: What’s the difference and why should I care?

Think about doing a little target practice.  Imagine the target board…concentric rings coming to a small bull’s-eye in the center. What kind of gun would you choose to hit the mark?  A sawed off shotgun or a rifle with a scope?  The choice is obvious. Airing PSAs or producing health websites with messages crafted for a “general audience” is like shooting a target with a sawed-off shotgun.  The buckshot may or may not hit the paper marker, some may hit the bull’s-eye but a lot of the shot will miss the mark.  One way to achieve more accuracy is to direct your message at a smaller audience.
Targeting refers to the process of segmenting a general, heterogeneous audience into smaller more homogeneous groups. Targeting is based on the advertising principle of market segmentation.Factors that are generally used to segment a population are age, sex, race, income, ethnicity, location and diagnosis.It involves developing a single intervention approach for the subgroup. The subgroup can be very well defined, for example, Chinese-American men, aged 50 to 60 who frequent a certain health center.Targeted materials are based on an aggregate profile of a specific population subgroup.  The focus is on characteristics that are assumed to be shared within the group, hopefully based on formative research.  For example a heart healthy cookbook might be created for a group of Latina mothers in San Antonio. It might be written in Spanish at a sixth grade reading level, use Latina models to explain messages and include testimonials from members of the Latina community about the importance of heart healthy nutrition.

Targeting and tailoring are not the same thing.  To carry the target practice analogy to its conclusion, if you use a rifle with a scope you are extremely likely to hit the bulls-eye.  Tailoring is like hitting the bull’s-eye.    Tailored messages or strategies are not for a group of people but are created for one particular individual.   The process of tailoring segments your target audience to its smallest unit, one person.   Messages, derived from an assessment answered by that individual,  are crafted to address individual level factors that relate to the health or behavioral outcome of interest.  Psychosocial behavioral determinants, like perceived barriers, or perceived self-efficacy to engage in behavior change, are collected in survey format.   Given the capabilities of computers and software, crafting a message specific to one recipient is possible.  In fact it is possible to create tailored message programs to maximize individuality by producing thousands to millions of combinations of tailored messages.So, why should I, as a health communicator, care about targeting and tailoring?  Stay tuned to find out.