Posts tagged ‘advice’

Must Waiting Be Inherent To Medical Care?

“By the time you see the doctor, you’re either dead or you’re better,” my mother-in-law told me. She had to have multiple tests, all with long waits to get the appointments and the results, before her health insurer would allow her to make an appointment with a specialist.

“Waiting is the bane of the medical system,” a former student, an R.N., concurred. Advances in medicine and technology have improved medical outcomes, but have often resulted in more waiting at a time when every other aspect of life is speeding up. Waiting is a systemic problem exacerbated by advances in medicine and by health care reform.

Some of the ways we wait:

  1. Wait to see if the symptoms go away or get worse. We all struggle with these decisions: do we need to be seen about the fever, back pain, or rash? Sometimes we wait because of denial or hopelessness; sometimes because of the cost or availability of medical care. I make decisions about when I need to see the doctor by asking myself if, under the same circumstances, I would take one of my children to the doctor.
  2. Wait to get an appointment scheduled. I’ve made appointments for a sick child by channeling an old friend who could be relentless: “That is not acceptable. I need an appointment today.” Obnoxious but it sometimes worked. The rest of the time, though, the period between making and having an appointment can feel very long.
  3. Wait to get to the appointment. Doctors and hospitals are more abundant in Greater Boston, where I live, than in other places, although traffic and parking can be problematic. Melody Smith Jones described a man’s six hour commute to see a doctor.
  4. Wait to be seen by the doctor. It isn’t called the waiting room for nothing. Dr. Atul Gawande wrote in The Checklist Manifesto about people in the waiting room getting irate when he was running two hours behind on a hectic day. Being irate – or anxious or bored – is unlikely to increase the quality of physician-patient communication.
  5. Wait in the examining room. At least in a waiting room you are dressed. If it is cold and you are wearing a paper or cloth johnny, distractions don’t work as well and examining rooms have fewer than waiting rooms.
  6. See the doctor. Nowadays, as my mother-in-law recounted, you have to wait for the doctor to review your records before even looking at you. I find it surprising that physician rating systems give equal weight to wait times as they do to “communicates” and “listens”, when the latter are so much more important.
  7. Wait in the lab. The selection of magazines is skimpier. You may be reviewing what you were told not to eat or drink: will that cup of black coffee skew the results?
  8. Wait for lab results. If there are any non-routine reasons for testing, this can be interminable. I leave a lab asking when results will be ready and then I call. A former student told me about using Harvard Vanguard’s MyHealth Online. She said, “I love getting the lab results immediately online but I can see how those without clinical training could be overwhelmed or confused by the data and how to interpret them.”
  9. Wait for the doctor’s interpretation of lab results. Lab results can be hard to decipher without clinical training, as my student said above. Even when I know results are available and the doctor has seen them, it can take many phone calls to obtain the doctor’s message via the secretary. Asking the doctor follow-up questions takes even longer. These are waits with a cell phone never turned off so you don’t miss the call.
  10. Loop. You think you’re done but you may need to see a specialist, get a second opinion, or have more tests. As my mother-in-law pointed out, this process can be controlled more by insurance companies than by doctors’ availability. Another type of waiting also takes place now: waiting to get better. A friend bemoaned how she “couldn’t wait” for her black eye resulting from a fall to clear up because she was tired of people staring at her.

Waiting Reduction

We all have to wait. Waiting is an inherent part of being ill. But here are some ways to reduce wait time or lessen the impact:

  1. Schedule tests and doctor’s appointments together. My exercise teacher told me about her husband’s hospital visit that started with a CT scan and ended with a doctor’s appointment to discuss the results. With no problems detected and a year until they next visit, they both said what a relief it was to get it over with quickly. Scheduling appointments together reduced both waiting time and anxiety, although not all tests results can be interpreted this quickly. Personally I find it is much easier to deal with a diagnosis than fear of what a symptom could mean.
  2. Avoid unnecessary appointments through email or phone. A Dutch friend, whose sister and aunt are doctors, recounted instances when she was able to get quick answers by email or phone to questions, be reassured, and save a lot of time and effort. One instance: “Once I was on holiday in Greece and sent my sister a picture when my eye was infected. She told me to buy drops and that it would go away.” Since most people do not have convenient relatives with medical degrees to talk to, being able to easily reach a doctor or nurse by email could provide a way to get a quick answer. Dr. Danny Sands has long been a proponent of physician-patient email, but most practices do not support it. I can easily see the benefits because email forces you to describe a situation concisely and images can be attached as appropriate.
  3. Meet Dr. Skype. Melody Smith Jones posed the question, “Can telehealth be used to end this man’s 6 hour commute by providing him access to the specialists he requires? What barriers and challenges still lay before us to make this a reality?” Dr. Joseph Kvedar answers this, saying “We have to move beyond the antiquated notion that you must visit a physical space and talk real-time with your health care provider to fulfill the process of care.  Seamless communication between you the patient and the system (including your provider but also your health information) will allow us to cut through what is a falsely complex and inefficient system to achieve more efficiency, less waiting and less anxiety.”
  4. Ask the expert. Self-proclaimed experts and community-verified experts provide advice in many sites like Yahoo! Answers. Recently there has been a proliferation of sites supporting health Q&A. A new entry, HealthTap, promotes that it has “Answers from 5,000 U.S. licensed physicians. No waiting room.” I tried it and questioned why I needed to answer so many personal questions during the registration process. Once registered, I started to ask a question but was stumped by how much context to provide. In general one of the things I like about Ask the Expert is the ability to browse other people’s questions – sometimes you learn more from questions you never would have thought to ask – and answers.
  5. Use clinics for non-urgent care. I had a friend who believed that it was important to see the same doctor because he or she could notice changes that might not otherwise be detected. While I agree, the Minute Clinic (note the name) model can potentially reduce some of the use of doctors for non-urgent care.
  6. Enhance health literacy skills. With 80% of US internet users looking online for health information, better health literacy skills are needed to guide the strategies used to seek, select, and use online health information. This is rarely taught in schools or by doctors, and is increasingly necessary because of the lower barriers with social media: it is easier than ever to promote herbal supplements and bad advice.
  7. Make waiting fun – or at least less stressful. Deirdre Walsh, a health coach and a former student, said, “The pain and frustration of endless waiting seems needlessly cruel. But it’s often the emotional toll of fear and uncertainty that does the most damage from the negative effects of stress chemicals on energy, sleep and mood.  If waiting is inevitable, there are self-awareness exercises that restore calm, power, and the sense of control. ” Games and gamification have potential as well: a version of “Wait, wait… don’t tell me!” for the waiting room?
  8. Is there an app for that? Not that I know of, but social media is being used by public health departments to post flu clinic waits and by emergency rooms to post wait times. What about for doctor’s visits? Dr. Richard Besser said, “You shouldn’t have to wait more than 15 minutes unless there’s an emergency.  Social media might be a great place for people to share waiting times.” Along those lines, I read about, but have not tried, WaitChecker, a web-based service to alert patients to appointment delays.
  9. Set expectations. The metaphor Trisha Torrey uses is “when you arrive at a busy restaurant on a Friday night, what’s your question to the host?  How long is the wait?  It’s only fair that providers manage our expectations about wait times, too.” It is easier to be patient with expectations set, not just for the length of a wait but the course of a disease.
  10. Use waiting time on task. A student once told me that she had a rash when pregnant and assumed it was unrelated to her pregnancy. She searched for information on her iPhone while in the waiting room, decided it might be related after all, and asked her doctor, who treated it. She saved another doctor’s appointment. What if all waiting rooms provided mobile devices? Or promoted prevention with education, exercises, and healthy snacks. Talk about captive audiences.

Quality of Health Care Is Paramount

It is important to maintain perspective: quality of health care is paramount. Everyone wants the best care possible and sometimes waiting is unavoidable. With no health advantages to waiting, put , as Dr. Ted Eytan said, “the patients’ cost of care, which includes the time they spend waiting, into the equation. Everything follows from that.” There is no reason to accept that it’s part of our health system, but, instead to work to reduce waiting, and to reduce the impact of waiting.

October 19, 2011 at 8:22 am 38 comments

The Art of Running a Twitter Chat: Lessons from Dr. Richard Besser and ABC News

I learned that Dr. Besser runs a weekly Twitter chat on Twitter, of course: @drrichardbesser: Reminder: Twitter chat today #abcDrBchat 1PM ET Are you prepared for a disaster? Let’s talk about it. @ABC

For the uninitiated, this translates to: Dr. Richard Besser, chief health and medical editor of ABC News and former acting director of the CDC, is running a Twitter chat about disaster preparation.

I participated in the chat because disaster preparedness was on my mind after being interviewed earlier in the day about how social media is being used in Japan and because I follow Dr. Besser and wanted to see how he conducted his chat. I participate in the weekly #hcsm chat when I can and lurk in others, so it’s fascinating to compare moderation techniques. The chat, by the way, was lively, informative, and well-attended. My personal highlight was when Dr. Besser retweeted me and then @ABC retweeted him!

I was in my office at Tufts School of Medicine and the door was open, so colleagues came by and enjoyed looking over my shoulder (they fell in the uninitiated category and were uniformly impressed that Dr. Besser wasn’t). After the chat ended, I contacted Dan Childs, aka DanChildsABC, who heads the Health section of ABCNews.com, to ask how Dr. Besser’s weekly chat started, how it is conducted, and what happens after the hour is over.

Lisa: Who had the idea to start the weekly chat with Dr. Besser? 
Dan: This was actually an idea that was hatched during a discussion between a few of us on the Health team and Niketa Patel, the Social Media Producer for ABCNews.com. We had wanted to do something special that would allow Dr. Besser to connect more directly to his audience through social media, and Niketa offered up this idea. This is the first such effort for a correspondent here at ABC News, so we’re the trailblazers in a way. Or the guinea pigs, depending on how you look at it. Trailblazing guinea pigs.
 
Lisa: Did he like the idea? 
Dan: Dr. Besser loved the idea. 
 
Lisa: This was my first chat with Dr. Besser but I see there is another next week. When did they start? 
Dan: Today was our fourth Twitter chat so far. We started about a month ago.
 
Lisa: How are topics selected?
Dan: Generally, the chat crew will share ideas either in a meeting or online. As with the chat today about disaster preparedness, we try to pick topics that are in the news and, therefore, within the public consciousness. Last week, Dr. Besser tweeted from Africa on issues of global health in the developing countries there. We try to pick something that is relevant, but also gives participants a feeling of going beyond the headlines to explore how these current issues are relevant to them.
 
Lisa: I was very impressed that Dr. Besser was supported by @LaraSalaABCNews, @BigCityRig, @CarrieHalperin, and @DanChildsABC. What actually happens during the chat?
Dan: Several members of the chat crew set up laptops in Dr. Besser’s office, while others of us participate from our offices and desks. Certain members of the chat crew will be responsible for certain aspects of the chat; one may be tasked with presenting questions during the chat, while another will be in charge of scouring ABCNews.com for articles that are relevant to the discussion at hand and posting those links. It is also usually helpful to have one or two people navigating various external sources on the web to ensure that all tweets we put out are based on the most current and reliable information available.
 
Lisa: What happens after the chat to review how it went? Who is there and what is the discussion? Are there noticeable changes the following week?
Dan: This is generally a discussion that takes place in the course of our Health team morning meetings, and then more informally throughout the day as we think of the things we learned from the previous chat session. What is great about this whole process is that the product has evolved pretty much constantly since its inception – every time we do this, we do at least one or two things a little bit differently. Sometimes these adjustments are small ones, probably barely noticeable to our audiences. But then there are larger changes that really seem to have an impact. In our most recent session, for example, we were able to coordinate with ABCNews.com to have the tweets appear in real-time in a text box on the Home Page and the Health page of the website. So when something like that happens, where the rest of the eyes in the network can see what you’re doing and how you’re interacting with the audience, that’s pretty exciting.

March 16, 2011 at 7:51 am 7 comments

Ask our Nutritionist: How Stonyfield and Other Websites Provide Nutrition Advice

Many food and health websites include the services of a nutritionist to answer consumer questions by email or on the site. Vicki Koenig, MS, RD, CDN is a Nutritionist who works for Stonyfield Farm and one of her responsibilities there is responding by email to “Ask our Nutritionist” questions. Vicki receives between 40 and 70 questions a month and answers them all individually, although for some she peruses her archive of her previous answers, which is categorized by topic, and the articles she wrote for the site. The most common are gluten-free, diet, and probiotic questions. People are also interested in where the milk comes from and how the cows are treated. There are many “off-the-wall” ones; the strangest of which was a request for a yogurt-covered dog biscuit recipe (which she found and sent). One of the most absurd was someone asking can your stomach explode from a food-eating contest (it can’t, Vicki assured me).

Despite their disclaimer (The information provided by our nutritionist is not intended to diagnose, treat, cure or prevent any disease or give medical advise [sic]. Always consult your family health practitioner before altering your health regimen) people ask Vicki questions that are out of the context of her role. There are many from people who are desperately looking for answers to serious health problems, and she refers them to sites like the American Dietetic Association or other profession organizations. For instance, someone recently wrote that she has lupus and wanted to know what to do, and Vicki provided links but not a personalized diet.

To ask Vicki a question requires a name and email address, which makes sense since she responds by email. There is also a picture of her with her daughters and a bio; both make her seem very human and welcoming. When I asked, Vicki said that she needed to update the picture since her children are older now and that a marketing person contributed to part of the bio.  She emphasized that she is very human. She stated that she’s a health professional, working mom, business partner with her husband and a consumer too.

Vicki also answers some of the questions that arrive through Facebook especially if clarification is needed. She contributed to the FAQs on the website and wrote all the articles in the Healthy Tips Library. She doesn’t respond to Twitter. Vicki has her own Facebook page, which she uses frequently, and a less used Twitter account. Her private practice has a website as well, which links to her Stonyfield articles (but does not include an Ask the Nutritionist feature).

One of the things I was curious about, especially after learning the volume of questions Vicki gets, was why Stonyfield doesn’t promote Vicki’s Q&A more and why it is done as private correspondence as opposed to being displayed and archived prominently on the site. Stonyfield’s response was:

We agree that our Ask our Nutritionist is a valuable and beneficial feature for our consumers. We can and should do a better job at featuring some of the frequently asked questions that consumers raise as they relate to health through good nutrition and organic foods. We tried to address this by providing related topics in our Healthy Tips Library, as well as focus on key product attributes that Stonyfield can deliver i.e. DHA, Omega 3s, etc.

I looked at a few other food company websites: Del Monte and Lean Cuisine are two that offer a list of Q&A with a nutritionist. Del Monte’s features a picture and bio of their nutritionist and an uncategorized list of questions with the promise that a new one is answered weekly from those submitted. Lean Cuisine has far more questions which are selected from some of “the most popular ones” asked and categorized. While the topics make sense, not all categories are populated. Some of the answers include product promotion. There is no bio with the picture of the nutritionist and registration is required to ask a question. Both are easy to find from the home pages.

The Dana Farber Cancer Center website includes a categorized Ask the Nutritionist Archive. The questions and answered are very detailed and specific to cancer patients. They also include a first name, last initial, and city and state, making them seem more authentic.Like the Stonyfield site, they are hard to find (without doing a search).

The Massachusetts Department of Public Health has an Ask the Nutritionist blog, where the comment field is used to ask questions and the answers are included below the question. While not categorized by topic, they are scrollable and many are very detailed and specific. There is also a picture and name but not a bio of the nutritionist. The blog is hard to find from the Dept. of Public Health site.

Go Ask Alice, a website developed by Columbia University primarily for college and high school students, has a page of nutrition questions. While the people responding are not identified by name or picture, the site states that all questions are answered by a team including Columbia University health educators. Each question includes the date originally published and the date last updated/reviewed and ends with links to related Q&As.

Curious I searched a little more and found other examples. Some, like Meritus Endocrinology, have an extensive archive while Washington Hospital Center’s Ask the Dietitian has a short list of questions. All the ones I found archived questions, although without any identifying information or a date, and most made it easy to ask questions. Stonyfield is therefore unusual in not providing an archive of questions.

If I was redesigning the Stonyfield site, I would include Vicki on the home page and let people coming to the site know that she is available to answer questions because it is such a valuable service and one that benefits the company in the helpfulness of this service to those who manage to find it on the site. (Of course, if more people know of Vicki’s availability, then her services might have to be limited.) I would include Vicki’s most recent Q&A on the home page with a link to the archive as a draw. Finally I would include at least a partial archive of questions and answers and, like Go Ask Alice! would include a date, and, like Dana Farber, would include at least a first name, city, and state because it makes it seem more like it came from a real person. However none of the questions I looked at on the above sites were generic or seemed fabricated because of the level of detail. The archive could prove valuable since someone else might have a question that you didn’t think to ask but benefit from. While there is already an enormous amount of information available online, the credibility of a nutritionist and the easy to digest (not an intentional pun) format of a Q&A could only benefit Stonyfield and allow more consumers to learn from other people’s questions and Vicki’s answers.

January 17, 2011 at 4:17 am 3 comments

Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women

I gave a talk at the MA Department of Public Health this week and started with a game called Hot or Not. I showed screen shots to get people’s instantaneous reactions, my point being that people leave a site if is not appealing. One of the sites that was considered very “hot” was Lu Xing’s beautifully-designed home page from her final project in Online Consumer Health at Tufts University School of Medicine.

Lu, a graduate student at Emerson College working toward a master’s degree in Health Communication, designed a site, “Safe Fish, Smart Baby: Fish Consumption Advice for Pregnant Women” that was motivated by “the fragmented information that pregnant women have received about the nutritional value and health risks associated with fish consumption resulted in confusion and misperceptions.”Lu’s aim for to “create a credible and professional website that provides clear fish consumption advice, fish coupons, and fish preparation skills for pregnant women, to help them make informed fish consumption decisions, so that they can have a smart and healthy baby.” Her paper describes the steps she took to design her site. Lu and I welcome your feedback on her well-written and insightful final paper.

January 9, 2011 at 1:58 am 2 comments

A Website for the Management of Narcolepsy

Students in Online Consumer Health at Tufts University School of Medicine design health websites for a topic of interest to them or redesign websites for real organizations. Ellen Langhans, a graduate student at Emerson College working toward a master’s degree in Health Communication, chose the management of narcolepsy for her topic. Her goal was “to create a site for people who live with narcolepsy – both patients and their loved ones alike – to help them manage the disorder,” to provide timely information, and to help site members learn from and connect with each other to thrive. Her final paper details the process she went through, which included the development of four personas and a competitive analysis of four websites: two for narcolepsy, Narcolepsy Network and The Stanford Center for Narcolepsy, and two for diabetes management that had similar goals, Diabetes.com and Take Action. Ellen and I welcome your feedback on her excellent and comprehensive paper.

December 28, 2010 at 11:19 pm 1 comment

Interview with Dana Jennings, the World’s Most Famous Patient Blogger

Dana Jennings writes what is arguably the world’s most famous patient blog about his treatment for prostate cancer. Just to be clear, I don’t have any statistics about how many readers he and other patient bloggers have. I believe his blog is the most widely read and best-know patient blog because of the number of comments he receives and its prominent location in the New York Times Health section, itself widely read. ComScore found that more than 123 million Americans visited newspaper sites in May and the New York Times led online newspapers with more than 32 million visitors and 719 million pages viewed during May 2010.

As an avid reader of his blog and an admirer of his eloquence, I spoke to Dana on June 18, 2010 about why he started the blog, how he writes it, and how it has helped him through his prostate cancer.

Lisa: How did the idea of writing a blog first come up?
Dana: I have been a working journalist since 1980. In October 2008, I was working on my 6th book and having trouble writing because I was obsessing over having cancer. At the same time I couldn’t find what I wanted online about prostate cancer even though there is a lot of information out there. So I thought I could write about this. I wanted to give the topic a distinctive voice and be honest, not just about prostate cancer, but about cancer and about being ill. I was concerned about my family’s reaction, but I spoke to my wife and sons and they were fine about it. A colleague put me in touch with New York Times health blogger Tara Parker-Pope who responded positively to the idea. It happened quickly after that.

Lisa: What has been most interesting for you about the process?
Dana: The two most interesting things about it were the extent to which writing it gave me an opportunity to find out what I thought about different aspects of having cancer, and the reaction to my blog, which stunned me. I but didn’t expect so many men to respond that I was articulating things for them or women to respond that I was saying what they wanted their husbands to say.

Lisa: How many readers do you have?
Dana: I don’t really get a count of readers for each post but some, like My Brief Life as a Women, have had hundreds of thousands of views. And a few posts have over 600 comments. I knew my blog had become well-known when Whoopi Goldberg made fun of me on The View.

Lisa: Do you read all the comments?
Dana: I read most. New York Times Op-Ed columnist Tom Friedman gets hundreds of comments and I suspect he doesn’t read all his comments, but it’s a different type of writing. I am a big fan of the 2-3 sentence comment, but even the long ones I skim. When I read my blog comments, I see that they really like me.

Lisa: Are any comments helpful or supportive?
Dana: It is helpful knowing that I’ve been able to help people, that I made it easier for people to talk about and go through this process. I am happy to read the advice in comments but I’m a strong-minded person and have my own ideas. It cracks my wife and me up when people suggest crazy cancer treatments.

Lisa: Are there gender differences in who reads or comments on your blog?
Dana: More women read my blog than men. Men and women respond differently: women tend to be more insightful and understand the emotion I’m trying to convey in the blog while men are more focused on data: name, rank, serial number. Men are more emotionally stunted in our society and think they have to be tough.

Lisa: Have you shown your blog to your doctors?
Dana: My oncologists have looked at it off and on, also the radiation technicians. They appreciate what I have to say. But I don’t write for them because my obligation is to my readers and fellow cancer patients.

Lisa: Is your blog edited?
Dana: My primary job is as an editor, so my posts go through a few drafts and then Tara Parker-Pope reads them and she may have some edits or changes which I look at. Finally a copy editor reviews it.

Lisa: How does the New York Times promote your blog?
Dana: It appears on the Health page with my picture, sometime highlighted at the top. Some posts have appeared as a most emailed article, which itself increases visibility, just like when a book appears on the bestseller list.

Lisa: Do you read other patient blogs?
Dana: I don’t. I spend time reading every day, but I read the New York Times and I read books. I try not to lose myself on the Internet. I’m 52, a dinosaur from age of print, although my sons are amused that I blog.

Lisa: Can you offer any advise about reading other people’s blogs or starting your own solely based on your own experiences?
Dana: I really don’t because I had the benefit of working here at The Times. But, if someone is obsessed about their situation and wants to write, then they should go ahead. It’s a big ol’ Internet.

June 22, 2010 at 3:14 am 3 comments

Why a Private Person Goes Public: Jesica Harringon’s Battle with Breast Cancer While Pregnant

Jesica Harrington is a 5th grade teacher at Timber Trail Elementary School in Castle Rock, Colorado whose patient story was featured on the Johnson & Johnson (J&J) website and in their 2009 Annual Report. Jesica was diagnosed with breast cancer while pregnant with twins, lost one of the babies a month later, and “underwent a mastectomy before beginning four rounds of chemotherapy.” She searched for information online and found little on battling breast cancer while pregnant. Her father, who also searched, found out about a blood test that captures, identifies, and counts circulating tumor cells in patients with certain types of metastatic cancer, which Jesica asked her doctor to order. Jesica delivered a healthy baby boy, completed her cancer treatment, and is in remission. I contacted her because of my interest in patient stories, curious about how her story was featured by J&J and why she decided to tell her story in a very public way.

Lisa: You mentioned that being diagnosed with breast cancer when you were pregnant made it harder to find information. Did you find that the professionals treating were less prepared?

Jesica: Initially, the diagnosing doctor seemed insecure about diagnosing my cancer and in explaining how we would treat it.  It was through our (mine and my husband’s) persistence that we went around the recommended procedure and sought out an oncologist directly to help us learn about what we would do with breast cancer and being pregnant with twins.  My oncologist came highly recommended and had prior experience with women in my situation, so I felt I was in good hands.

Lisa: Did you search for information online about breast cancer and pregnancy, or did people recommend sites to you?

Jesica: I had friends send me all kinds of information, mostly success stories and current practices similar to what I was dealing with.  I searched for answers as well, especially because I had so many questions.  The problem was realizing there is a fine line between being/getting educated and just knowing too much.

Lisa: What did you find that was ultimately most helpful?

Jesica: Factual information about types of cancer, methods to treat, drugs and their side effects, and a couple of stories about local women, whom I talked with, who had been through breast cancer while pregnant.

Lisa: How did you learn about J&J’s test?

Jesica: My father was looking for methods to monitor how and if chemotherapy is working.  He came across a local news story, which led us to a newly released test used at the University of Colorado Cancer Center (UCCC).  He told me to take a look at the article, that it was something he thought I should do.  I contacted a rep from the UCCC and inquired how I could take the test.  I persuaded my oncologist to order the test and we went from there.

Lisa: Why did you decide to tell your story?

Jesica:   People were interested in the information I had.  I am a very private person, but also felt that this was something I had to share.  I couldn’t keep it secret, when my own life affected so many around me (students, parents, coworkers, family, friends, neighbors, doctors, other women in my situation, media…) In the back of my mind, I hoped that my diagnosis and battle with breast cancer could and would be used for future references.  After I had been diagnosed, all of my students and co-workers wanted to support me in my battle-they held a “carnival for the cure” from which all proceeds went to my family and me.  Through this event, local papers and news media were contacted.  My story initially appeared on a newscast and in a couple of newspapers.

Lisa: Would you have told others your story had your situation been more “typical”?

Jesica: Yes, but it wasn’t.  I knew that there had to be more people like me out there searching for information and feeling helpless.  Why not take what I’ve experienced and let others learn from it, both from a personal perspective and from a medical point of view.

Lisa: Can you tell me more about the process where J&J contacted, interviewed, and photographed you?

Jesica: Through a publication put out at UCCC, J&J contacted me about the CTC test. I was approached to educate people who are going through a similar experience and to get the word out about a test I found to be helpful during my treatment. I told J&J my story by phone and shared my CaringBridge page as well provided background about all I’d been through. A couple of people come out to interview me, take pictures, and shoot video, both at school while I was teaching and at home that evening. Everything was 100% accurate in both the article and video except they mentioned Boulder instead of Castle Rock in the video.

Lisa: How did you feel about including your students and your family?

Jesica: Fine; I thought it was for a good cause.  Someone could learn from my story and experiences and could see what to expect if they happen to be in the same situation.  I’d like to think I was a success story, which we all need to help us find motivation to fight a battle such as one with breast cancer.

Lisa: I was surprised J&J posted the two articles and videos at http://www.jnj.com/connect/caring/patient-stories/hope-against-cancer/ and http://www.investor.jnj.com/2009annualreport/medical-devices/hope.html without telling you – it seems like they should have let you know, do you agree?

Jesica: Yes.

Lisa: You mentioned that you did other interviews – what made you decide to?

Jesica: I felt strongly about letting others know about a blood test that was out there to help with tracking chemo throughout treatment.  I knew the information wasn’t prevalent and I wanted to get it out there.

Lisa: Has it been helpful for your friends and family that you were open about the process you were going though?

Jesica: Yes, information is very powerful.  I wanted my friends and family to know and understand what I was going through.  People always feel helpless when others are struggling with a disease and going through treatment and they don’t always know how to help, but by being open about it, I think they felt more comfortable in being there for me instead of feeling sorry for me.

Lisa: Finally, does it help you to know that you are helping others? Does talking about it help you process your own emotions?

Jesica: Yes, to both. I’m a teacher – it’s in my blood. I’ve written journals all my life; it’s something that helps me be able to process what comes my way, to reflect and cope.



June 16, 2010 at 6:09 pm 3 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 is Director of the Certificate Program in Digital Health Communication. Lisa teaches Designing Health Campaigns using Social Media, Social Media and Health, Mobile Health Design, and Digital Strategies for Health Communication. Contact Lisa: lisa.gualtieri@tufts.edu

@lisagualtieri


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