Posts tagged ‘doctors’

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

End of Life Decision Making

End-of-life decision-making is an increasing pervasive topic that has personal, political, legal, and, of course, medical implications. George Lundberg, MD said that “every American deserves the right to choose to have a death with dignity and as pain-free as medical science and practice can provide. To achieve that, patients and physicians must discuss the options for managing an upcoming death.” Atul Gawande, MD wrote in Letting Go: What should medicine do when it can’t save your life?, “But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?” Gawande told about La Crosse, Wisconsin, where, by 1996, 85% of residents who died had written advanced directives.

La Crosse is the exception. Rational, informed decision-making is difficult; most people don’t know much about advance directives and don’t have good resources to learn about the many facets of end-of-life decision-making. Enter Mardi Coleman, a Master of Science candidate in Health Communication at Tufts University School of Medicine. With a background in geriatric mental health and an interest in how healthcare can meet the Institute of Medicine’s aims for a system that is efficient, equitable, effective, timely, patient-centered, and safe, she designed a end-of-life decision-making website in Online Consumer Health. The overarching goal of the website, as described in her final paper, is “to provide information that allows users to make informed end of life legal, medical treatment, and service decisions,” specifically to:

Help users clarify their understanding of their beliefs and values regarding end of life, treatments, and services, including that beliefs and values are situational and change over time.

Provide the types of information users need or want regarding advance directives, life-sustaining treatments, and services that extend or support the end of life in order to make informed decisions.

Engage first-time users and invite reuse because the website is attractive, well laid-out, and easy to use, and contains information that is relevant across many stages of decision-making.

February 28, 2011 at 9:44 pm 5 comments

How and Why Massachusetts General Hospital (MGH) Uses Twitter to Reach Patients

Mike Morrison tweets for Massachusetts General Hospital as @MassGeneralNews and for Massachusetts General Hospital for Children as @MGHfC. I met Mike when I tweeted about the Benson-Henry Institute for Mind-Body Medicine including @MassGeneralNews in my tweet and Mike immediately followed me. I contacted him to find out what his strategy is for Twitter use and what the benefits have been:

Lisa: Let’s start with the name: Locally we say MGH or Mass General and even the website uses all variations of the hospital name. How did you decide what to use for Twitter to be recognizable and searchable to locals and everyone else?

Mike: The name was a tough decision. MGH was definitely an option but outside of Massachusetts it doesn’t resonate. Beyond that it was a matter of pragmatism. Twitter limited the number of characters for our name and we definitely wanted “News” in the title so after that is was pretty much a foregone conclusion.

Lisa: Do you know anything about which MGH employees – or patients – are on Twitter?

Mike: We usually find out about patients, doctors, and staff on Twitter by seeing their tweets. Each time we’re followed by an account I like to take a good look at the profile to see if they are in one of those categories because I want to continue building that sense of community. We also occasionally remind our own staff about our presence through our internal weekly newsletter.

Lisa: Tell me about your background: what did you do before this and how did you learn to use social media?

Mike: After graduating from the University of Maine in 2005, I completed a post-college PR/Marketing internship at North Shore Medical Center in Salem, MA, close to my hometown. After 3 months I was hired at the Museum of Science (MOS) in Boston as a Publicist in the Media Relations department. I worked at the MOS for more than 3.5 years and loved every minute. Though I had originally joined Facebook in college, it was at MOS that I began to see its full potential as a professional communications tool. Along with my colleagues, I worked to launch both a Facebook “fan” page, as they called it before the most recent “like” change, as well a personal page for Cliff, the Museum’s triceratops fossil. I also helped to launch both the YouTube channel and the @MuseumOfScience Twitter page. The jump to social media communication, though conceptual at first, became a reality for us when the media industry began to severely cut staff. Many of those cuts came from Arts and Entertainment writers and reporters who helped us garner much of our publicity. It became quite clear to us that utilizing social media was an important practice.

Lisa: Explain more about why it was important and also how social media for a museum compares to a hospital?

Mike: Social media is important because it allowed us to connect with passionate Museum fans and communicate our news that, while perhaps not ‘big” enough for traditional press to cover, was important to them. We were also able to have a lot of fun. We ran contests for our Facebook fans and Twitter followers. The staff at MOS continue to come up with even better ideas for engaging fans. In terms of a comparison, both hospitals and museums need to listen and interact. At the hospital we have to ensure that we apply our high standards of patient privacy to our social media practice. Though I didn’t realize it before I arrived, MGH’s world-class research programs ensure that science is very much part of what we do. Some of the most covered MGH stories come from our ground breaking research.

Lisa: How long have you been at MGH, what are your roles, and how did you get this position?

Mike: I arrived in October of 2009. I received an email from a friend letting me know they had noticed the MGH position and thought I should take a look. At its most basic level, my job entails the traditional proactive and reactive media relations (pitching stories/pairing our experts with media). I also oversee social media for the Public Affairs department and do general writing assignments like web stories or annual report stories. Two examples are http://www.massgeneral.org/about/newsarticle.aspx?id=2462 and http://www.massgeneral.org/about/newsarticle.aspx?id=2377.

Lisa: What do you do specifically in this role?

Mike: While at MOS, I would say 80% of my job was proactive and 20% reactive, whereas as now that number is reversed. We respond to hundreds of media calls each year and also operate a live television studio to accommodate national and international broadcast requests. We in Public Affairs work on a beat system with staffers covering different areas of the hospital. Mine include Global Health, Neurology, Neurosurgery, Imaging, and Orthopedics. The other part of what I do – and a major reason why I was hired – was to help launch and integrate social media communications. Luckily my superiors saw the importance of social media before I got here and when the opportunity came to fill a position they made social media a priority. So to that end, I launched @MassGeneralNews on Twitter last February and hope to hit 1,000 followers by the end of this year. I also launched our YouTube channel (www.YouTube.com/massgeneralhospital).

Lisa: Does MGH have a Facebook presence as well?

Mike: Yes, our colleagues in the development office do a great job: http://www.facebook.com/#!/massgeneral , we have a really nice collaboration. Recently, some colleagues and I did launch a profile page in order to communicate bicentennial (we turn 200 in 2011) and history info from the hospital. The profile belongs to Padihershef, a literal mummy who resides in the Ether Dome: http://www.facebook.com/#!/MGHPadi

Lisa: How much time do you spend on the average day?

Mike: Assuming my day isn’t a crazy media day with a major event, I generally work 8:30-5:00 with 60-70% of that time being spent on media calls and the vast majority of the remaining time spent on social media (practice, monitoring, and self-education).

Lisa: What happens with Twitter when you are off duty – do you ever check nights or weekends? Mike: When it comes to Twitter I’m never off duty. While it’s not required for me to check on weekends, I absolutely do. While that probably comes more from a personal desire to grow the presence and not an expressed mandate, I also know the conversation never stops and I like to keep up on it. Occasionally I “unplug.”

Lisa: What oversight is there?

Mike: I’m fortunate to work with superiors and colleagues who “get it.” Though our social media presence is monitored by the leaders of our department, we have a decent amount of leeway.

Lisa: Do you get physicians and other staff at MGH involved, for instance feeding information to you to tweet?

Mike: Often we are approached by different groups in the hospital about the use of social media to promote their efforts. We do in fact work with doctors and administrators from various departments to add their content to our platforms whenever possible and ask that they send us current interesting content.  For example we were approached by an extremely talented group of researchers from our Emergency Department who created a great free app for the iPhone, which lets users find the closest emergency room to their location anywhere in the United States. Our strategy here was to create this YouTube video and then pitch to bloggers encouraging them to use our embed code for their stories. We got great a great response on this as it was posted to Boston.com and Wired.com’s Geek Dad Blog. Although it’s tough to get publicity among a sea of apps, our video allowed us to provide more content for bloggers and increased our chances of getting attention. Even if we didn’t have the pitching success we did, we were able to tweet the video and the link to download, as well as post to our Facebook page. It was a great combination of traditional pitching, content creation, and social media.

Lisa: Does MGH have a social media policy?

Mike: MGH does have a social media policy which helps to provide clarity for our employees and audiences for social media interaction with MGH, or on behalf of MGH.

Lisa: What is the ROI – is MGH doing this because everyone else is or because they see this as essential to their mission, and how do you know you’ve been successful:

Mike: For us, it was easier to think of social media as an important tool we can use to accomplish the goals we already have. We are more of a news/PR office and not marketing so I’m more concerned with communicating and sharing stories or useful information and less about bottom line. Although that’s probably a little shortsighted of me, it’s easier to get started when you already have the goals and the content, and think of social media as a vehicle for both. While I think ROI is important, I’m a true believer that if your reputation is solid you’re going to get the business anyway. To MGH, social media is essential to our mission. Our mission (although I’m not quoting) is to help people. If we know people are looking for help through social media channels, we should be there. For me, it’s like us not having a website or telephone: how can we help if we’re not using the same technology as our patients?

Lisa: How much monitoring do you do of MGH’s online presence and how (obviously you saw my tweet!)?

Mike: I monitor Twitter constantly. I have searches set up via tweetdeck for our Twitter handle, hospital name, and several of its variations. While I don’t log any of the info in any kind of official report, I do respond to and inform folks we work with about any tweets or communications that could indicate a wide-spread issue that warrants a response. Also, if time allows, I do some simple Google searches (blogs, news, etc.) just to see what’s out there.

Lisa: What are specific strategies you use to follow, get followed, tweet, and get retweeted?

Mike: First off, the tweet is king. I try to always offer interesting content, or at least content that is a bit more humanizing and takes away the mystique of a huge faceless organization. Beyond that I try to slowly follow people who are tweeting about us or healthcare in general. I find using hash tags to file my tweets by medical topic often results in followers because people searching that tag are usually the most passionate. Also doing simple things like adding social media icons to my email (as long as outlook is behaving) and putting information about our Twitter handle in the weekly employee newsletter helps. Most importantly, I build followers by engaging. For me it would be easy to view Twitter as a one-way source, but MGH needs to be retweeting and asking questions to develop a truly valuable follower base.  Also, our breaking scientific research news is probably our most retweeted.

Lisa: Do you compare what you are doing to other hospitals or any other organizations?

Mike: I definitely like to see what other hospitals are doing with social media. Any great organization keeps up on industry trends and I think lots of hospitals across Boston and the country are being really creative. It’s also a great benefit to attend conferences with folks at other hospitals because we trade ideas and tips. I think that’s what I like most about social media: the community spirit.

Lisa: For someone starting out in a similar role or wanting to improve a hospital’s online presence, what are your 5 pieces of advice?

Mike:

  1. Content. If you don’t have good content, you have nothing. Obviously this isn’t my idea but I believe it’s the gold standard of online communications. Not offering good content would be like opening a YouTube page to host your TV commercials…snooze……
  2. Commit. Never use social media “cause everyone else is doing it.” Once you have an idea of your content, make sure you commit the time or allow your employees to commit to learning and practicing it. Even if it only takes a minute to tweet something, you need to be looking at Twitter constantly. At any other job, searching YouTube channels may be grounds for a conversation with your manager, for me it’s a matter of researching best practices and keeping up on trends.
  3. Culture. In order to become involved in social media, you have to understand the culture. If you ever friended your parents on Facebook, you get my point. When starting out, just listen. This is especially true with Twitter. For example, someone who doesn’t understand the Twitter culture might find it odd for MGH to retweet a “competing” hospital who just won an award for a service we offer. But the Twitter audience is completely comfortable with this. At the end of the day it’s about standing on your own work, your own reputation.
  4. Put yourself in your audience’s shoes. For us, it’s patients. When I think about good content, I try to think about a person who has just learned that they or a family member has been diagnosed with an illness. What they want is to get the critical information quickly. What they don’t want are slick commercials, pop up ads, or a link to a phone number with no information.
  5. Be human. How many times do we hear about robo customer service? Or how some large organization seems like a monolith that doesn’t listen? Social media puts the power back in the consumer’s hands and it’s important to engage in two-way conversation. When people feel connected to your organization they’ll work with you. Even if they have a negative experience, they’ll return as long as they’ve been heard.

December 3, 2010 at 10:08 pm 7 comments

How Carolyn Kingston Used the Internet Before and After Hip Replacement Surgery

Diana Cole told me, “The internet saved my life,” and recounted a story about using the internet to identify a bat bite and learn about rabies in bats, leading to an emergency room trip. She later introduced me to her sister, Carolyn Kingston, who attributed her successful outcome from hip replacement surgery to her use of the internet. I asked Carolyn about her general use of the internet for health, her specific use for her surgery, and the blog she started to record her surgery and recovery.

Lisa: When did you start using the internet for health information and why?

Carolyn: I’ve been using the internet for health information for years, mostly to supplement and clarify information I get from my doctor. For example, as a person who has had chronic colitis for many years, I explored a number of sites searching for alternative treatments that would help cut down or eliminate some of the strong medications used in traditional medicine. I found a book online with a holistic dietary approach, which I followed during flare-ups for a month or two at a time for several years with limited success. Ulcerative colitis is tricky because up till now doctors have no idea what causes it.

Lisa: Do you and Diana discuss your respective internet use?

Carolyn: Diana and I often discuss and share information about use of the internet for health related issues. Her experience with the bat bite is an example. My health-related searches on the internet are usually very targeted, and directed toward answering a specific question rather than broad, generalized browsing.

Lisa: What led up to the hip replacement surgery Diana told me about?

Carolyn: I first noticed discomfort in my right hip about 8 years ago. In the last few years X-rays and an MRI showed increased deterioration of the cartilage in the hip joint and an increasing narrowing of the space between the ball and socket of the hip – typical of degenerative osteoarthritis. The time to have hip surgery is determined by how it feels, not how it looks, so it is largely the patient’s decision. With regular low impact exercising, such as swimming, walking, yoga, and tai chi, and herbal remedies, such as Glucosamine Chondroitin and fish oil, I managed to keep going pretty comfortably until the last few months. Even then it was not as much chronic pain but lack of mobility and the ability to enjoy exercising that was the impetus to schedule the surgery.

Lisa: At what point did you start searching online?

Carolyn: In January 2010, right after making the appointment for surgery on April 7. I’d seen my orthopedic surgeon for the second time in December, looking for a medication stronger than Naproxen and Tylenol. He prescribed Tramadol and we discussed whether to have the surgery now. Basically it was left up to me – a wait and see how it goes situation. In my first appointment with him about a year before he described in detail the advantages of the newer anterior approach to hip replacement, that the entry was more toward the front of the hip resulting in less bleeding, no cutting of muscles, and faster recovery time. In addition titanium is now used for most of the replacements, so it lasts longer, up to 25-30 years.

Lisa: What information were you looking for?

Carolyn: My first internet search was to find out more about “anterior hip replacement” and there was lots of information out there, including medical websites describing all the advantages and testimonial blogs by patients. I found few negative testimonials about this approach to hip surgery. What I did not use the internet for was to look for alternatives to surgery, and there were many ads on sites I visited claiming various ways to avoid hip replacement. I also did not research surgeons online because I was fortunate to have an excellent surgeon whom I liked, as well as the positive testimony of a friend who’d had a very successful result with the same surgeon several months before.

Lisa: Diana told me that you learned things online that led to a good outcome: what were they and could you have learned them in other ways?

Carolyn: What I learned online was very helpful both pre- and post-surgery. I found sites that had lists of pre-op exercises, which I printed out and began doing faithfully 6 weeks before the surgery. I found checklists of how to prepare your home for post-op recovery. I searched Amazon for books and ordered two, plus a meditation tape on preparing for surgery recommended by my therapist. I could have found out these things through my health plan, but this was efficient and didn’t involve making an appointment. To satisfy my need for information I ordered online the 2010 version of John Hopkins paper on Arthritis and set a “Google Alert” on current media articles on hip replacements. Some of this information was useful for the short speech I gave in March to my local Toastmasters Club on “Making Medical Decisions.” Post-surgery I felt ready to watch a step-by-step video of how this particular surgery is performed. I was also interested in how long it would be to recover full muscle strength in the muscles of my right leg.

Lisa: Did you look for specialized information, such as concerns you had as a singer? Were these searches successful?

Carolyn: I googled the length of time post-surgical effects of general anesthesia and the effects of intubation on the singing voice. On that issue I did not find any helpful information.

Lisa: How has your experience influenced your attitude toward using the internet?

Carolyn: My attitude toward using the internet is very positive. I use it to educate myself and to find reassurance, but not for self-intervention. I am very wary of sites that make claims to heal you in X months or days. The internet is an amazing resource which I use daily for one thing or another and I am grateful for its existence.

Lisa: I saw the blog you started, Becoming Hip. Can you tell me why you started it and why you didn’t continue it? Have you read other health related blogs and, if so, did you find them helpful?

Carolyn: I started my blog partly to learn how to set one up but primarily to share my feelings and thoughts day-to-day about my upcoming surgery with friends and family. It was also a way to remember my mother who died last summer and who had a total of three hip replacement surgeries, the first in 1978. In those days the prosthesis didn’t last as long, necessitating a re-do of her first one 17 years later.

Lisa: Why you didn’t continue it?

Carolyn: Somehow I got in the habit of writing my entries longhand (something I am used to doing in my journal) and never switched over to writing on the computer. Post surgery I wrote mostly to record the rehabilitation progress I was making which will be useful in the likely event I have the other hip replaced. Your question, however, has prompted me to transcribe what I wrote over the last 6 months and I am posting them bit-by-bit on my blog.

Lisa: Have you read other health-related blogs, how did you find them, and did you find them helpful?

Carolyn: I did read a number of other blogs and found them of varying usefulness. Some were way too self indulgent, others were very informative and encouraging. Recently I was concerned about muscle tightness in my operated leg so I Googled “muscle tightness post hip replacement” and found a very helpful entry on an Orthopedic website. It re-assured me that muscle tightness often takes several months to resolve.

Lisa: Did you – or do you still – follow any of these blogs regularly?

Carolyn: No, I don’t follow any blogs regularly. I usually just Google a specific question.

Lisa: Did you show your blog or journal to your doctor? Did you talk to your doctor about your internet searches or ask for recommendations of websites?

Carolyn: No, I didn’t.

Lisa: What advice do you have for someone in your situation based on these experiences, both your internet research and your use of a journal and blog?

Carolyn: If you are a person who likes to have a full understanding of what you will be going through, the internet is a great resource. It can’t replace personal conversations with your doctor of others on your support team but can give you more understanding and greater peace of mind.

September 4, 2010 at 2:02 am 3 comments

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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