Everyone has a wonderful story but not everyone knows how to tell it: CancerForward survivor stories

Many health websites include stories, but some have richer sets of well-written stories than others. After seeing the stories in CancerForward™, I spoke to Beth Sanders Moore, the founder, to ask her why they include stories and how they solicit them.

ImageBeth (left) is herself a thirteen-year breast cancer survivor, her mother is a thirty-two-year breast cancer survivor, and her grandfather was a cancer survivor. Through these experiences she has seen how the experience of being a cancer patient has changed, with people asking questions and evaluating treatment options now in a way they didn’t even thirteen years ago. Beth has also seen a change in what survivors want, and CancerForward was created to meet this need, with survivorship stories being one of the most important components, both for the people who read them and those who tell them. Beth sees many ways that people try to make a difference – volunteering, making donations, or telling their story – and all provide a way to give back or pay it forward.stories in CancerForward™, I spoke to Beth Sanders Moore, the founder, to ask her why they include stories and how they solicit them.

Since people are drawn to celebrities, the stories include those of high-profile survivors, like Cokie Roberts, but most of them are of people from all walks of life who have survived cancer. Having seen that the site includes a link to “Share Your Survivor Story”, I asked Beth about their process. When someone contacts them through this form, a writer works with them to help them tell their story. Beth said that some people submit stories that need little editing, while others need assistance because they don’t know how to express their experiences clearly or they become too caught up in emotions when recounting their story.  Beth said that people process their experiences differently:  some tell their stories soon after treatment, and some wait a long time into their survivorship.  The completed stories are catalogued on CancerForward’s site by both cancer type and by practical, physical and emotional issues common to most survivors.

Interestingly, many stories shared with CancerForward are sent in the evening.  Beth suspects that with fewer distractions of daily life, most people have more time for self-reflection at night and may also grow lonely and want to reach out by sharing their stories.  She notes that far more people go on the CancerForward site and read stories than submit them.  Some begin the “share” process and don’t finish it.  The average time a site visitor stays on the site is about five minutes; some are less than a minute and some are for hours.  If site visits are an indicator of popularity, the stories of high-profile women survivors are most popular, followed by the self-written stories submitted by women.  That trend tracks with survivorship information consumption in general, says Beth.  Historically, women discuss their experiences more openly and more often than men.

I asked Beth how many story inquiries they receive and she said 2-4 every month on their website.  Many comments posted in connection with a story are essentially mini- stories. CancerForward maintains its Facebook page so that survivors and caregivers can make comments and/or post their stories there.  I asked Beth if she thought people had stigma or privacy concerns about submitting stories, and she said that she thought it was a very individual decision to share a story although less likely  in some cultures than others. She further thought that people feel good about sharing their story and receive support from others through the comments.

CancerForward-Website-young-adult-cancer-survivor-Tony-QuinnWhen asked if time and money were infinite what CancerForward would do differently, Beth immediately said they’d add more video stories, which people enjoy.   Producing high quality videos is costly, which has prevented CancerForward from creating as many as they would like.  Because of the uptick in smart phone video production, there is a project underway in 2014 to accommodate appropriate “selfie” videos and brief self-written stories on the CancerForward site.  Because the amount of the site’s educational information and story lines has grown so rapidly, CancerForward  is reworking its entire site to make navigating the site and locating content easier for visitors.

Beth and I discussed how every story has a message. Cokie Roberts’ message was that cancer was not going to stop her. While at one point CancerForward considered letting people create blogs on the site, they ultimately decided that blogs are too personal and detailed while the stories convey a clear message and are more hopeful. In our discussion we identified a taxonomy of health sites that incorporate stories. They range, at one extreme, from sites that request stories but have none displayed, to, at the other extreme, Weight Watcher’s success stories, which are very professionally done. CancerForward’s stories are near that end, because of their use of writers to work with people. Beth concluded, “Everyone has a wonderful story but not everyone knows how to tell it.”

I asked Beth if she has a favorite story on the site, a question for which she said there isn’t a simple answer. At one time or another, she’s read every story that’s been submitted whether it made it through the publication process or not. “They’re not all upbeat or hopeful, but they’re all real and to me, compelling.  There are so many, many facets to cancer survivorship and contexts in which people fight cancer.”  Beth admits that for inspiration, she’s drawn to the stories of adolescent and young adult survivors who’ve readjusted their sails, succeeded in forging a “new normal” in their lives, and are moving forward.  And, she concedes there is a story that she thinks about often that speaks to resilience and facing reality.  It’s the last conversation Beth had with her friend, Elizabeth Edwards about two months before Ms. Edwards died of breast cancer.  Believing it important that survivors speak openly about palliative care and preparing for death, Ms. Edwards allowed Beth to publish their personal conversation as a story for CancerForward.  It turned out to be the last “interview” Mrs. Edwards would give about her cancer and her life.

February 19, 2014 at 2:46 am 2 comments

5 Minute Social Media Makeovers: Stepka Family Dental

I presented 3 workshops on Social Media for Dentists at Yankee Dental Congress 2014 in Boston, where I met Joanna Stepka, who was at my workshop to learn more about how to use social media for her husband’s dental practice. Like most people in the workshop, she had a smartphone, but, unlike many people there, she was using it to tweet during the workshop. Impressed that she was live-tweeting during the workshop, I looked at the online presence of Stepka Family Dental after the workshop. Here is my 5 minute makeover.


Stepka Family Dental’s Facebook page had a “vanity url”, namely https://www.facebook.com/StepkaFamilyDental. Easy to do, but not all dental Stepka Facebookpractices do it. The first time I looked the cover photo was bland but the new one (right), updated 2 days after the workshop, is great and I assumed was inspired by what I taught. The pictures are clearly not stock photos, which I recommended dental practices avoid because they are so bland, but ones of the staff.

Could this be improved? In the workshop I showed sites that use group shots instead of individual ones. The individual photos, however, are easier to update if there is turnover. I like seasonally appropriate imagery and these look like they were taken outside in the summer, not recently. Overall, they are great pictures and the staff look competent and approachable, which is what you want in a dental practice.

The branding for the practice is clear. The tagline is “Providing dental excellence to Rhode Island families since 1973. We specialize in treating your family like it’s our own.” It is a little long but welcoming and establishes credibility by showing that this is an established practice.

The Facebook page has 341 likes, which is much better than most of the dental practices with a Facebook presence that I showed during the workshop.Stepka signI suspected that the practice must inform patients that they are on Facebook. (In fact, Joanna emailed me the new sign for the waiting room, which is included to the right.)

The Facebook posts are of an appropriate frequency – around 6 a month at a glance. They do not seem to be on a schedule, but rather are occasional updates about office activities, seasonal information, and some dental humor and education. Some of the posts have likes and comments, showing that people are engaging with the content.

The website and other social media

The blog leads to the website, which has more information on the practice, the staff, testimonials, and work in the community. The other forms of social media are depicted with icons, including Google+, Pinterest, and Twitter. The website highlights the recent Facebook posts, which is great for letting patients know not just that Facebook is used but what is posted, which is more enticing than an icon.Stepka twitter

Of the other social media platforms, Twitter is the most heavily used after Facebook and, on the website the icon for Twitter should not be last since it is updated frequently. The profile on Twitter (right), “Providing dental excellence to Northern Rhode Island families since 1973,” a truncation of the Facebook tagline that maintains the consistent branding. The image is, I understand from Joanna, in the process of being updated. Currently there is text over text, which looks sloppy.

The tweets are great – like the Facebook posts, they are interesting, diverse, and quite human, which is very appropriate for a family dental practice. The frequency is a bit sporadic, but there are at least a few tweets every month, so anyone looking would never feel like it was an abandoned account (I had examples of those in my workshop) or one not worth following. There are fewer followers than on Facebook, so there are opportunities to inform patients about the account when they are waiting for or leaving an appointment or in any emails sent out. Also, some professional Twitter accounts will indicate who is tweeting, which Joanna might consider.


The other social media, besides Facebook and Twitter, seems more experimental, like Pinterest and the blog. While there is some overlap between what is posted on the different platforms, the messaging is never exactly replicated, which is good. And experimentation is good, not just from the perspective of what Joanna tries, but from that of seeing what reaches and appeals to their target audience. Certainly it would be better if the website and all social media used the same name, Stepka Dental or Stepka Family Dental, and the same banner imagery, but each type of social media has restrictions and limitations, making it hard to replicate branding.

While the posts and tweets were varied and interesting, more on the staff might be of interest. Even the fact that staff were at Yankee Dental Congress could be highlighted, since patients want their dentists and hygienists to be current in their knowledge. Other opportunities are to provide some additional educational materials targeting the needs of the different age groups they see, since it is a family practice, and to include more images  of the staff. They should consider featuring some patients, with permission, in short videos or pictures, and even add pictures where possible to the testimonials. These images could replace the stock photos currently in use on the website. Given that the posts have personality, the images should too. Since they are involved in the community, more of that would give “human interest”. They could consider the use of a quarterly newsletter or eCards sent by email for patient birthdays or for holidays like Valentine’s Day with dental care messages.

Finally, in a search on “North Smithfield dentist” they came up high, so clearly what they are doing is resulting in good visibility in search results. Their steady use of multiple social media platforms can only help with visibility. I say this without knowing their goals, their other forms of promotion, or their metrics.


My overall impression is very positive. Without knowing the Stepka photopractice’s goals, but assuming that they are trying to attract new patients and to keep current patients engaged and educated, I think they are doing a great job. I heard from Joanna, who is shown here with her husband, Dr. Greg Stepka, “I was definitely inspired by your workshop and knew that I could ‘tidy up’ our social media fairly quickly. I plan on implementing e-newsletters and inviting patients to follow our social media as well. I started Pinterest & Google + after your workshop so those are in their infancy.” This ended up not being as much of a makeover but a commentary on what is clearly a work in progress.

February 5, 2014 at 9:38 am 2 comments

Google Glass: First Impressions and Posing Questions

IMG_0498Nerd chic? Geek chic? I even updated my twitter profile to show off my new Google Glass. My “winning tweet” was “#ifihadglass I’d provide context-sensitive, evidence-based exercise, diet, & adherence reminders & risk warnings to improve public health”. In retrospect, not bad for 137 characters! That was February 21. On March 28 @ProjectGlass tweeted, “@lisagualtieri You’re invited to join our #glassexplorers program. Woohoo! Make sure to follow us – we’ll DM in the coming weeks.” I was amazed how many people were excited for me, and asking to borrow them, including people who I never would have suspected would have heard of Google Glass. June 3 I received notification that “Your Glass is now ready!”

Less than 48 hours later, after the excitement of getting them and being trained to use them, my first reaction to them is that I’m not sure I want to wear glasses, or glass, or any device on a frame over my ears. I am pleased not to need glasses or contacts. Maybe it is my upbringing. At my aunt and uncle’s 50th wedding anniversary yesterday, I noticed that my mother’s eyes were closed in the 2 pictures of her in their wedding album. She didn’t wear her glasses when she was dressed up, and probably couldn’t see much without them. Are they my new fashion accessory?

My second reaction is that it is not yet apparent how Google Glass can improve my life and how I can fulfill the promise of my tweet. To improve my life, I’ve thought about teaching, research, meetings, exercise, and dancing, as a start, and see ways to capture and  lifelog but not yet how to make substantial improvements. To improve public health, I asked myself, “What is possible if everyone had them?” and variations of “What if cancer patients had them?” I have glimmers of ideas but am still working on answers.

July 1, 2013 at 10:22 pm Leave a comment

The Death of Reflection

I love my smartphone. It provides immediate information I need to run my busy life. But, there is a downside to constant connectivity for me and for society: the death of reflection.

Being hyper-connected—and agitated when not—means losing those precious moments when disparate ideas merge, when pleasant memories bring joy, and when pondering a problem leads to innovation. Accessing and using too much information all the time stifles reflection and all of its benefits.

Fitness, I believe, offers the solution of listening to one’s body, which is the antithesis of the quantified-self movement in which everything is tracked. When I run, I can feel last night’s overindulgence at dinner or, equally, last night’s eight hours of sleep. But all the devices to track where I am, my pace, or the comparison to my “friends” or my last run, distract me from the reflective process that often leads to great work after my run.

It’s not just when I run. It is all those moments waiting for an elevator or standing in line when I check my email, see if anyone has mentioned me on Twitter, or make my next “Words with Friends” move.

Letting one’s mind wander and reflecting on both one’s internal thoughts and feelings and the external world leads to great ideas—and by that I don’t mean just new and better devices.

A version of this will appear in a report on “Disappearing Futures” in the September-October FUTURIST. Thanks to Cynthia G. Wagner, Editor of the FUTURIST, and to Analicia Villanueva and Mike Gualtieri for their feedback.

June 8, 2013 at 10:09 pm 2 comments

Why I Run: A Reflection at the “Action Stage”

Why I Started

I started running 15 weeks ago because I decided to do the opposite of what I felt like doing. I was exhausted after teaching a 1-week course and, when resting didn’t help, I decided to run. I was already exercising, so, when I tried Couch25K, which my son recommended, I was beyond “couch”. But my previous attempts to run had been not serious (in college), had been at too fast a pace to sustain (a few years ago), or purely in my head (New Year’s resolutions). The latter seems to be common; when I told people I was running, many said, “I’ve been thinking of starting too.” It’s like when people view modern art and say, “I can do that.” But most don’t.

Using the language of Transtheoretical Model of Change, these people are at the precontemplation stage. I was too, until I started my “Do the Opposite” plan. The other stages are contemplation, preparation, action, and maintenance. I am solidly at the action stage.

What I Have Accomplished So Far

Even though I didn’t follow Couch25K, it made me aware of starting slow and building up. I knew the importance of a schedule thanks to my runner husband, Mike, and the exercise class I’ve been going to for years. I committed to running three times a week, and have only had one time I run twice (and a few I’ve run four times).

While my first run was six minutes, I have now completed a 5k. My longest run was 1:04:13, which included going up Nob Hill in San Francisco. I called this “breaking the one-hour barrier,” after reading about (the very different) “Breaking the Two-Hour Marathon Barrier.”

I have run in the rain, which seemed unappealing, but wasn’t bad after the first minute. I have run in heat and humidity – I started in August – and on crisp, fall days. I understand why runners say that fall is their favorite season.

Why I Persisted

It was great to see progress: I was able to go on longer runs and rarely felt tired at the end. It was really fun to run with Mike, who would run at my pace, not his own faster one. I especially liked running when we travelled – the aforementioned one at APHA in San Francisco and another in Montreal. Because I go to an exercise class, I generally don’t exercise when travelling, arguably when I need it most. Running is also a great way to see a city.

Sometimes I found running boring, although less so the longer I do it. I tried listening to music, and tried thinking about something specific (that was how I wrote this – in my head, while on a run).

I tried apps for running and didn’t like any of them. They took more effort to configure than seemed reasonable given that I just wanted to try them, and they asked for my height, weight, and age without telling me how the information would be used (apparently only to calculate how many calories I burned). Their tracking didn’t motivate me because I already had a sense of accomplishment at the end of each run. The reminders I still get from the apps would be unlikely to motivate me if I had started running and then stopped, as the apps believe. (I would like to think further how app design can incorporate Transtheoretical Model of Change in my Mobile Health Design course next summer.)

However I used Twitter and Facebook to informally track my runs, and loved the support and encouragement I received. It was fun to run into friends and colleagues who had not commented online but congratulated me on my running accomplishments. The funniest was when I saw a friend a few days after my 5k and she did a celebratory dance, singing my finish time. I have made new friends too, like Boston Globe writer and runner Elizabeth Comeau.

What’s Next

I am at the action, not the maintenance, stage; I feel committed to continuing but it feels a little tenuous. Mike surprised me once with new running clothes, and I also bought a long-sleeved running shirt in one of my favorite colors, thinking about Janet Wasserstein, who told me that she played better tennis in stylish tennis outfits. With the days getting colder, I need to avoid deterrents, and cold is definitely one of them.

I sometimes catalogue the benefits of running to keep myself from slipping out of the action stage. I like how running is a barometer of how I feel: what’s on my mind, did I get enough sleep? I enjoy being outside and moving, especially given how much I sit the rest of the day. My ”skinny jeans” fit the same, although I assume running has many health benefits for me. I am still working on how my insights can be incorporated into the design of my “Do the Opposite” app for new runners.

It seems like I’ll be at the maintenance stage when I actually look forward to running, not to being done. For right now, I like the sense of accomplishment.

November 5, 2012 at 8:09 pm 6 comments

Mobile Health Search

One of the most fascinating things about health apps is the process of selecting them: defining the need, determining how to search and which search terms to use, deciding which to consider, and deciding which to try. Having thought a lot about health app search, I was thrilled to have an opportunity to talk about the broader issue of mobile health search in a session at APHA12 on health information seeking.

My presentation first argued that it is almost impossible to focus only on laptops and desktops when considering health information seeking given the preponderance of mobile devices. I then talked about what mobile devices provide health seekers:

  • Immediacy and access
  • Affinity
  • Multiple methods of input/output
  • Context
As a taste of my talk, for affinity I said that the close, dare I say intimate, relationship many people have with their smartphones, has an impact on health searches. Affinity in combination with the greater privacy possible on a small screen are likely why people are more likely to search for information about sexually transmitted diseases and mental health. For context, I spoke about the role of the contextual information people see, hear, feel, and remember and how that impacts mobile health search; and how external information and data from sensors, such as weather, location, time of day, and blood pressure,  impact personalization and tailoring. I also challenged my audience to imagine if public health had the same resources as eCommerce for big data and predictive analytics. Instead of helping Target sell more products, timely and relevant information could help people live healthier lives.

My slides are posted here. Many thanks to Susannah Fox and John Mangano for sharing Pew and Comscore data respectively.

October 31, 2012 at 8:30 am Leave a comment

Intimate Partner Violence Screening: Why It Is Inconsistent and How It Can Be Improved

I was curious why Lahey Clinic, a nonprofit group practice outside of Boston, started asking patients, “Are you safe at home?” during intake. Trying to find this out turned into an exploration of the inconsistent state of intimate partner violence screening in the US.

 “Are You Safe At Home?”

The first time I was asked “Are you safe at home?” during patient intake at Lahey Clinic, I was surprised that such a personal question was asked in such an impersonal way – by a healthcare professional hunched over a laptop and not making eye contact with me (which inspired a blog post on the role of eye contact in physician-patient communication).  It seemed like the only purpose of the question was to check a box on an online form to show that they had screened for intimate partner violence (IPV), the au courant term for domestic abuse. When and why was “Are you safe at home?” added to Lahey’s patient intake process?

Finding the answer to my questions turned out to be surprisingly elusive:

  • When was “Are you safe at home?” added to patient intake?
    • Is it used for all ages and genders?
    • Is the question included in the EMR?
    • Is it required by law or by accrediting agencies?
  • Why was IPV screening added to patient intake?
    • Who asks the question and what training are they given about how to ask? Are they screening for IPV in other ways?
    • What wording and method of asking is most effective?
    • What protocols are in place if a patient answers in the negative or reacts with a response other than “Yes”?
    • Has data been collected on the answers and on the actions taken, or on the impact on detecting IPV?

I became interested in the answers, not just for Lahey, but for all hospitals and doctor’s practices.

IPV Screening May Be Required for Hospital Accreditation

I asked a nurse practitioner at Lahey Clinic, who said “Are you safe at home?” was added about two years ago and was asked of both men and women. She thought it was required as part of The Joint Commission’s (JCAHO) accreditation process and that when Lahey is up for review they need to show that all patients were asked. The nurse practitioner said that she did not know of a formal protocol if a patient said they were not safe at home and would have to decide on the spot to notify the police or social services. She further said that some patients get angry when asked because they see it as an invasion of privacy, and she speculated that these strong reactions might indicate a problem.

I learned more about JCAHO, which certifies hospitals and other medical facilities based on adherence to quality standards. Lahey was last accredited in November 2011, and the full report is available as are the accountability measures, which focus on patient safety initiatives, but not on IPV (that I could find). The results from the Survey of Patients’ Hospital Experiences were also available. (Since this was more recent than what was reported on Lahey’s site, I wondered if people actually check hospital survey results or for JCAHO accreditation. My curiosity led me to How to choose a hospital where JCAHO was listed as one of four other sources of information about hospitals to check besides Consumer Reports’ own ratings). Lahey’s commitment to IPV goes beyond the screening question, as indicated by their provision of Domestic Violence Resources as part of patient information and their Domestic Violence Initiative. Other Greater Boston hospital websites I looked at did not provide this information or it was more buried in their site.

Government Agencies Recommend IPV Prevention and Screening

JCAHO’s website led me to patient safety initiatives from The Agency for Healthcare Research and Quality (AHRQ) and to an Institute of Medicine (IOM) report, Clinical Preventive Services for Women: Closing the Gaps, that recommends to the US Department of Health and Human Services that women’s preventive services include screening and counseling for interpersonal and domestic violence in a culturally sensitive and supportive manner.

As early as 1992, the American Medical Association (AMA) issued non-binding guidelines that advised doctors to routinely question female patients about domestic violence and that they should consider the possibility of domestic abuse if patients provided “unlikely stories for how sustained an injury.” The guidelines addressed the actions a physician should take before the patient leaves the office. More recently, in November, 2007, AMA Policy E-2.02 Physicians’ Obligations in Preventing, Identifying, and Treating Violence and Abuse was adopted. It included the identification, treatment, and reporting of abuse and mentions the need to extend this to emotional abuse or neglect and to “patients who do not belong to population groups that are traditionally believed to be at risk of abuse”. Specifically, it said that:

Physicians should routinely inquire about physical, sexual, and psychological abuse as part of the medical history. Physicians should also consider abuse as a factor in the presentation of medical complaints because patients’ experiences with interpersonal violence or abuse may adversely affect their health status or ability to adhere to medical recommendations.

Another AMA report that referred to the 2007 guidelines stated that “Research results indicate, however, a high rate of missed opportunities for patient identification in clinical settings.”

About 25% of Woman Are Victims of IPV at Some Time

Amy LaVertu, MLS, an Information Services Librarian at the Hirsh Health Sciences Library at Tufts University, conducted searches to help me with my IPV research. (The use of multiple terms, including intimate partner violence, partner violence, domestic violence, and domestic abuse, made searching more difficult for both Amy and me.) Amy found out about the mandatory reporting laws that some states like California have that require health practitioners to report any known or suspected abuse but do not specify screening processes. Amy also found data about the incidence of IPV; US Preventative Services Task Force (USPSTF) reported, “It is hard to know exactly how many women experience IPV because it is not always reported. However, it is thought that between 1.3 and 5.3 million women experience IPV every year. About 25 percent of women experience IPV at some time during their lives.” This highlighted the extent of the problem as well as the need for consistent reporting, and made me yet again wonder what happens to the screening data from Lahey and other institutions.

IPV Screening Takes Many Forms

The recommendations about screening did not specify the wording or timing of screening. Through searches I located many patient intake forms that included the question “Are you safe at home” One was from Fenway Health in Boston, so I contacted Chris Viveiros, a former student, who is Fenway’s Associate Director of Communications. Chris found out from his colleagues that the online form “isn’t Fenway’s actual patient intake form. ‘The Fenway Guide to LGBT Health’ is a medical textbook that Fenway produced and published in conjunction with the American College of Physicians and the form was included in that textbook as a model form that others can adopt.” Chris checked with Fenway’s medical and behavioral health departments, and found that neither department includes that question on their patient intake form. Fenway’s Violence Recovery Program coordinator elaborated, “The Behavioral Health forms actually ask a series of questions about potential partner abuse developed from the screening tool the Violence Recovery Program uses to assess domestic violence.” Instead of “Are you safe at home?”, for over five years they have used a series of direct questions about what a person may be experiencing.

Another former student, Niranjan Karnik, MD, PhD, said that the recognition in the 1970s and 1980s of domestic violence as a public health issue is what led to the interest in screening. He guessed that each hospital creates their own intake forms, and pointed out that at University of Chicago Medicine, where he practices, “there are different intake forms for each clinic or department. In psychiatry we do not ask this question in this form; instead we tend to screen for childhood abuse as well as present abuse under the general rubric of past psychiatric history or social history.” Niranjan summarized my pursuit perfectly, saying “One over-arching issue to consider is how decentralized and fractured the US health care system is so that there is not one answer to these questions but many depending on individual institutional histories.”

Evidence That IPV Screening Works

Wanting to learn more about the accuracy, efficiency, and acceptability of screening processes, I read a systematic review update of the USPTF’s report on IVP screening in the Annals of Internal Medicine that states:

In conclusion, screening instruments designed for health care settings can accurately identify women experiencing IPV. Screening women for IPV could reduce IPV and improve health outcomes depending on the population screened and outcome measured, although effectiveness trials have important limitations. Screening has minimal adverse effects, but some women experience discomfort, loss of privacy, emotional distress, and concerns about further abuse.

Since I had initially been concerned about eye contact when screening, I was particularly interested in the comparison of delivery methods; the review stated that “higher rates of IPV disclosure resulting from self-administered methods than face-to-face questioning. Computerized screening increases rates of IPV discussion, disclosure, and service provision and is more acceptable for patients.” I wasn’t sure how these results fit with the findings in a JAMA article on the effect of computerized screening for partner violence on physical and mental health that concluded: “Among women receiving care in primary care clinics, providing a partner violence resource list with or without screening did not result in improved health.” Clearly more research needs to be done on screening effectiveness. I further wondered if any research on screening methods looked at the research reported in “The Media Equation: How People Treat Computers, Television, and New Media Like Real People and Places” by Byron Reeves and Clifford Nass, “The Man Who Lied to His Laptop: What Computers Can Teach Us About Human Relationships” by Clifford Nass, and other research on how people relate to technology.

What Helps People Who Are Being Abused?

When I spoke to Libby Bradshaw, DO, MS, my colleague in the Department of Public Health and Community Medicine at Tufts University School of Medicine, she focused on what most helps people who are being abused. As an ER physician, Libby used the Transtheoretical Model of Behavior Change (TTM) to assess which stage the person was at. (The five stages of change are precontemplation, contemplation, preparation, action, and maintenance.) At the precontemplation stage, she said, one can raise  awareness and help people identify themselves as victims. Libby would say to someone she suspected was a victim of abuse, “I’m concerned about your safety and anyone’s safety who has injuries like yours” to open a door to disclosure. Another colleague, Marcia M. Boumil, MS, JD, LL.M., agreed with Libby and talked about the value of deflection and repetition. Both Libby and Marcia said that it is important to be sensitive to sending someone home with literature and that a wallet card is often better than something larger.

Tara Montgomery, Director, Health Partnerships & Impact at Consumer Reports, sent me The Minnesota Center Against Violence and Abuse paper, Building Bridges between Domestic Violence Advocates and Health Care Providers, which promotes collaborations between domestic violence advocates and health care providers that answer questions including: “Will this program or policy make battered women safer?” and “Will this program or policy make all women safer?” (The paper, written in 1999, uses terminology, like “battered women”, that is rarely used today.)

IPV Prevention and Screening

We have moved beyond the notion of “battered women” to include both physical and emotional abuse and to acknowledge that this is a public health problem that crosses all boundaries and must be taken seriously because, as Libby pointed out, victims of abuse have been killed. Many organizations are focusing on prevention, notably Healthy People 2020, which includes, as developmental objectives, the reduction of physical violence, sexual violence, psychological abuse, and stalking by current or former intimate partners.

A component of prevention is increasing awareness, which, as I learned through my research, is being done through traditional approaches (posters, flyers on bathroom stalls, brochures, and wallet cards) and more recent ones (websites, social media such as CDC’s VetoViolence campaign on Facebook, app challenges such as Ending Violence @ Home, Teen Dating Violence Awareness Month, and Domestic Violence Awareness Month). Libby was on the board of directors of Jane Doe Inc., The Massachusetts Coalition Against Sexual Assault and Domestic Abuse. Their website has a “Leave this site quickly” tab, acknowledging that someone viewing the site might not be in a safe situation, and extensive information on how to find help. While some of the site is focused on women, they balance the need to be inclusive while being specific enough to provide helpful services.

I returned to Libby’s excellent point about what best helps victims of IPV reach and move past the precontemplative stage of TTM to the action stage. From what I learned from Niranjan about University of Chicago Medicine, from Chris about  Fenway Health, and from the nurse practitioner about Lahey Clinic, it seems that the use and wording of a screening question is based on, as Niranjan put it, “local practice and perceived needs”. Everything I learned leads me to believe that more standardized, evidence-based processes screening processes are needed. If screening instruments work, as the Annals of Internal Medicine review found, then what is the best wording to use to elicit a disclosure and the best delivery method (and does eye contact increase disclosure)?

Could more standardized screening processes lead to better reporting? The many constituents, including JCAHO, AMA, USPHS, CDC, hospitals, advocacy groups, and providers, differ in their goals and how they shape practice patterns. (I would like to make a flow chart showing where IPV decisions are made and the paths through which they reach institutions, health care providers, and patients.)

“We Do Not Have the Ability to Know Everything”

Niranjan said, “Invariably organizations are forced to make choices and what to ask and how much to dig because we do not have the ability to know everything. Who makes these choices about what is on a form is often less clear, and that opacity is what you found along your journey. A clerk may be tasked with creating a form, or a committee of physicians and nurses. There is little in the way of standard of practice for the development of medical infrastructure (I use this term in the broadest sense to include forms, apps, programs, charts, physical space and technology), and yet there is so much of the outcome that infrastructure determines.”

Healthcare professionals have a unique opportunity to identify IPV early to break the cycle of physical, psychological, and sexual violence. Requiring IPV screening in all states and all hospitals and doctor’s practices is a huge step in the right direction. But, in the spirit of evidence-based medicine, more research must be done to determine the specific IPV screening procedures and protocols that are most effective in detecting IPV and helping victims of abuse.

September 5, 2012 at 12:59 am 6 comments

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Lisa Gualtieri, PhD, ScM

Lisa GualtieriLisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She teaches Online Consumer Health, Social Media and Health, Mobile Health Design (online), and Digital Strategies for Health Communication (1 week summer institute). Contact Lisa: lisa.gualtieri@tufts.edu



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