Posts tagged ‘pain’
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.
Stories can enhance health websites because they resonate with health information seekers, who find support and encouragement from the experiences of others like them. Two excellent examples are Weight Watchers’ Success Stories and Livestrong.org’s Survivorship Stories. Both sites include extensive libraries of well-written stories about people’s experiences losing weight and surviving cancer, respectively.
Because of the effectiveness of stories in health websites like these, I challenge my Online Consumer Health students to consider how the inclusion of stories can enhance the websites they design in class. In one assignment, they first review the purpose, length, transparency of authorship, writing style, and perceived accuracy of stories on health websites. Then they either write or reuse stories from other websites for their own sites.
In my constant search for examples to use in class, I came across the stories in RediscoverYourGo. I contacted the developer to learn about the planning and design of the website, particularly how the decision was made to use stories.
I spoke with Simon Lee, CEO of Lee-Stafford on February 8, 2010. RediscoverYourGo was developed for a medical device company, Smith & Nephew, that manufactures parts for hip and knee implants. On the home page, “stories” is one of 4 tabs on the left and 3 links to stories are featured on the lower right next to “Learn from real patients who have rediscovered what it means to live pain free.” The “stories” tab leads to a list of the replacement products headed by, “Real people who have rediscovered their go.” Each replacement product has story snippets from people who have had surgery to implant that product (example to the left). The story snippets are brief, first-person quotes and they include the name (generally the first name and last initial but in some cases the full name), city, and product, illustrated by a photograph. Rather than use a headshot, many show active poses and look like they were taken informally, not by a professional photographer (in contrast to the posed “after” pictures on Weight Watchers). There is some duplication, with some people appearing in more than one category, presumably because the person has used multiple products. The first person quotes were extracted from a letter or interview with, as Simon said, “100% real patients.”
Selecting a snippet leads to a longer story in the third person about the person’s experience with pain, learning about and contacting the surgeon, undergoing the surgery, recovering, and developing a post-surgery active lifestyle. The header includes more about the person, including occupation, a larger version of the snippet photograph, and a picture of the replacement product. Many of the stories identify the storyteller’s age, and the photographs indicate age as well. Stories are more likely to resonate with someone who identifies with the storyteller, which, in this case, might be because of replacement product, age, or recreational activity. Weight Watchers facilitates this by sorting stories by gender, age, or total weight loss and inviting a viewer to “Read about someone like you”.
The use of stories is “a toe in the water” to create an online community for patients with Smith & Nephew products. What lay behind the use of stories, Simon told me, was the desire to create a “patient ambassador network” to capitalize on patient stories. Often patients with debilitating pain became advocates for the surgeon who “fixed” their problem: they wrote letters thanking the doctors who performed their replacement surgery for giving them their life back and were eager to discuss their outcomes with others.
Simon believes the more open use of social media or forums was not possible because of concerns about monitoring, disclosures and privacy, a concern shared by all the major orthopaedic and spine device companies. Highlighting patient experiences on a website seemed the best alternative.
The overall website design goal was to modernize the brand and create more youthful and non-surgical-looking site as befitting one of the big growth areas: patients 45+. Previously, the primary target audience was 65+. The focus on the new demographic is because a growing number of younger people are seeking partial replacements. The potential exists that they will then become loyal customers to the brand and their surgeon. Simon believes that healthcare is local and that decisions to choose care are “based on who can treat me and where can I be treated.” Furthermore he believes that “educated patients are happy patients and happy patients are advocates for the doctor who ‘healed’ them.”
My friend Jan, a breast cancer survivor, told me about her use of complementary and alternative medicine (CAM) Web sites and how she has developed a “wackiness filter” to determine which to pursue beyond an initial glance. Interested in learning if wackiness filters are common, I posted a question in twitter about what are the attributes of a Web site that makes you convinced it is “wacky” and what are the warning signals to you? I further asked if this was more of an issue with CAM.
I heard from S.R., who said, “I am in good health and have never had any health challenges. So, I am not sure how useful my strategy is. It’s all talk until then, no?” She looks for “wellness as opposed to disease.” Two of her strategies are reading books before going online and using the resources provided by graduate programs in CAM.
I am fairly receptive to alternative therapies. Being half (East) Indian helps me appreciate them more easily perhaps. But I have a strong Western bias for controlled studies and scientific evidence.
Favourite med resource is internet, but it is just one of the tools. I use my GP to confirm or point me in another direction. Hardly ever rely on her exclusively any more (she is overworked). I also have an old CPS (drug directory) — paper copy. I ask all my friends for their experiences, especially a friend of mine who is a Buddhist and extraordinarily accepting.
I don’t have the skill to understand random control studies; but tend to be cynical b/c of how they are funded. This means I tend to rely on people who interpret them for me like T. Colin Campbell (author of China Study). He is an especially good source because he too tries to integrate east and west, with a western sensibility.
Strategy is always to rely on corroboration – triangulation, isn’t that what researcher’s call it?
If a pharmaceutical company funds a resource, I am ten times more skeptical, with good reason.
For alternative therapies, I tend to read books first, then go to the web from there. Maybe the slower reading, and complete thoughts help me understand where I would be hesitant online. Alternative medicine does not spring from nowhere, and it is not difficult to figure out who is flaky and who speaks with authority borne from wisdom (unlike western medicine, imho). I often email authors; I love living in a world where this is possible.
I have looked at graduate programs in alternative medicine. They understand the western mind and what it takes to reassure (if only to get funding!). I have followed their resource links in the past, and liked what I found.
I never use Google to search for symptoms. The results are a mess.
My undergrad degree is in Biochemistry, and I am in the health care industry. So I am not uncomfortable with the lingo.
I try to pay a lot of attention to my pain signals from my body. I am not great at this, but I’m learning. (Personal correspondence, S.R., May 10, 2009)
As a start to writing my book, which is my new year’s resolution, I am writing blog entries about the ideas I have associated with the topic of online consumer health. My first topic is when people think or worry about health.
In early January, it is clear that much thought centers around new year’s resolutions to lose weight (arguably the most common), stop smoking or drinking, eat healthier, sleep more, etc. (I just read that making more resolutions is better than a few because the end result is better.) People also think about their health when they are in pain or discomfort. People think about their health when someone close to them or someone in the news has health problems, and in reaction might implement a healthier lifestyle after losing a close friend to heart disease. People think about their health when they read an article about health, and certainly the popular press is full of news about results of studies and their implications. Similarly, people think about health issues when they see pharmaceutical advertisements – and possibly when they read spam that is health-related. And finally people think about their health in preparation for, during, or following a doctor’s visit.
Is their much difference between how people think about their own or other’s health? Probably the relationship is key. As a parent I worry more about my children’s health than my own.
From a health literacy perspective, how much do people think about a health issue in an accurate or constructive manner? It may be that emotions, such as fear, have a huge impact – in either direction, depending on the person and situation – on the actions people take.
When do people go from thinking or worrying about health care to taking an action, be it talking to someone (friend, family, stranger, or professional) or looking online? Is there a trigger like fear or pain or a threshold to their worry?