Internet and illness experience
This short paper formed the basis of a poster presented at HSANZ meeting in Perth 2008. Understanding how patients and carers access and use resources for information can improve clinical practice and facilitate the delivery of relevant and contextual patient-centred education.
As of December 2007 75.9% of the Australian population– 15,504,532 people – use the internet (www.internetworldstats.com/), however, there are barriers to internet usage, one of which is the “digital divide” (Kontos et al 2007). People in a higher socioeconomic position (SEP) demonstrate a greater access and usage compared to those in a lower SEP. Broadband access has also been shown to influence health seeking internet usage (Cline & Haynes 2001) and as of December 2007, only 23% of the Australian population had Broadband access (www.internetworldstats.com/) and therefore, a significant proportion of the population are not in a position to be “Web 2.0 Natives” .
A new kind of patient, the e-patient (Ferguson et al 2007) has been proposed, mediated by the rapid growth of web-based health-related information and the possibility of establishing or joining online transgeographic communities of people with the same disease or the same problem (Ayme et al 2008). Patients use the internet “to gain, maintain and display familiarity with a remarkable body of medical and experiential knowledge about their illness” (Ziebland et al 2004). This enables them to be able to be technically proficient and discriminating users of medical information and medical services, covertly questioning their doctors advice (Ziebland et al 2004) further undermining a paternalism in health care. So powerful is this notion that it has prompted discussion of implications for the control of medical knowledge, which is no longer the sole preserve of doctors, and the de-professionalisation of medicine (Hardey 1999, Blumenthal 2002, Muir Gray 2002).
One emerging area of internet use is the blog. Blog, as you know, is an abridgement of web log. A blog is a website, usually maintained by an individual, with regular entries of commentary, descriptions of events, or other material such as graphics or video. Entries are commonly displayed in reverse chronological order. “Blog” can also be used as a verb, meaning to maintain or add content to a blog. An emerging field of study examines how blogs are used by people with cancer. Chung & Kim (2008) found that blogs were used four ways: for prevention and care, problem-solving, emotion management, and information-sharing. Frost & Massagli (2008) found three functions of comments on blogs: targeted questions to others with shared experiences; advice and recommendations and; forming and solidifying relationships based on similarity. The importance of blogs is evidenced in the efforts of Pharmaceutical and other industries with financial interests in health to exploit them, including Google’s tying of it’s AdSense products to individual blogs. (Hsu & Lin 2007).
What is apparent is that people with serious illness use the internet, including chat sites, support groups, informational sites and blogs, to help them to be more active partners in their own health care. – so what is the significance of blogs in that transition.
This exploratory study examined four blogs written by people with multiple myeloma. All were in the public domain and not requiring any password access. The impact of novel agents on the experience of living with myeloma was of specific interest and so all were searched using key words “Velcade”, “Revlimid”, “Lenolidamide” and “novel agent”.
10 to 80 entries were found in each blog with up to 5 comments by other people, per entry. These were analysed to determine how peers affected by myeloma communicated via blogs. Consent was given by the blogee to publish comments, graphs and pictures in the poster and in this paper.
This study found 2 major ways that people used their blogs ; as an information resource (evaluating treatment choices; reporting complications and biomedical data; publishing news and reports; sharing advice and recommendations) ;and as a source of unicity ( story telling; supportive comments; acknowledgment).
Blogs as an Information Source
Treatment choice evaluation was based on up to date biomedical data and included discussion of; treatment efficacy; availability of clinical trials; side effect profiles; drug cost and; drug availability following trials. Medical care facilities & specific doctor’s skills and expertise were included in discussion about treatment choices. People’s own experience with side effects and response to treatments were also key discussion points. Blogees were informed and understood about the choices available to them. This, combined with their experiential knowledge made them experts in their field. These comments below are typical of treatment choice discussions :
“There are 2 trials I’m thinking about. One is the monoclonal antibody for IL-6 that I’ve spoken about before. The other is a Velcade vs. Velcade + Doxil trial. “
“I haven’t been complying with treatment this month. Revlimid makes me feel pretty terrible, and I wanted to be able to help my mom through her surgeries and whatever other tx is needed. I do feel better in most ways, now that I’ve been off Revlimid for a month. I’m afraid to say that I didn’t tell anyone I was doing this. If I need to, I’ll go back on it in September. I don’t think it was doing much for me though. Just making me feel sick”
“Since I feel that the CNTO 328 trial is not working for me, I’ve been thinking about my next treatment step. I’m almost 100% sure that I want to enrol in the Multicenter, Open-Label, Single-Arm, Expanded Access Program For Lenalidomide Plus Dexamethasone In Previously Treated Subjects With Multiple Myeloma. It involves high dose dex, which isn’t very appealing to me “
Reporting complications and biomedical data involved sharing experiences and offering advice. Blogees used both their own experience and information both from health care professionals and from alternative sources. One blogee’s hospital had the facility of online access to her ‘labs’ which was important for her to manage her myeloma. Reporting side effects and events also served as a vent, a resource for catharsis and unicity.
“This week I just had Zometa, which I learned from others never to have on the same day as Velcade. They reported severe flu-like symptoms”
“Here’s a new picture of what the rash looks like. Don’t click on the thumbnail if you don’t want to see it. I think it’s hideous. I try to stay in so that I don’t attract mobs of torch-wielding villagers out in front of the house.”
“IgA is pretty stable
This is a chart of my IgA values since before the SCT last summer. I stopped Velcade and Doxil in July, 2007 and the SCT took place at the end of August. This is quantitative serum IgA in mg/dL.”
Press Releases from news media, pharmaceutical companies and journals were posted as biomedical updates and included links and information about new resources and ‘treatment results and breakthroughs’. In addition to reporting the blogees discussed drug costs, availability & lobbying. Pharma and news media sources, such as CNN, were emailed and updates reported.
“ MMSupport.net unveils “Ask the Expert”, featuring Multiple Myeloma physician and scientist, James Berenson M.D.”
“Those of us in the trials get the drug at no cost to ourselves, but when it’s approved for use with MM, we’ll have to pay (one way or another). I’m going to start an email campaign to let the media know about this. So far, I’ve only written to CNN and had no response.”
“ Have not heard what the latest is from Celgene, FDA or anywhere else. anyone know what’s the current state?”
A source of Unicity
Unicity is the condition of being united; quality of the unique; unification. (Lat 13cen) These blogs offered a space where people could identify with each other as having a fairly rare and incurable illness and share accumulated empirical knowledge gained both through their illness experience and their acquired medical knowledge. They offered each other not only empathy in their shared experience, but an empowerment and an alliance.
Story Telling. Blogs were structured around a chronological story, generally starting with an introduction to the blogger and their myeloma narrative. Commenters similarly introduced themselves by a giving a short narrative about their own or their significant other’s myeloma story. Particular similarities such as the same type of myeloma (Ig referenced) were noted in the discussion. Requests for information could be made directly or could be integrated within an overall story.
“How have you been? Did the Revlimid produce a durable response?”
“I have myeloma too. Your test results indicate IgA Lambda light chain disease and disease and mine is IgG Lambda light chain disease. Very similar test results “
Patients use the internet in a variety of ways. Much of the clear benefit found by patients from this resource may be underestimated or unknown. What is clear, however, is that these bloggers have become experts in their illness, possessing both medical and empirical knowledge and that they believe that expertise in patienthood is an important tool in their healthcare management. Their blogging is a key tool and expression of this expertise.
Clinicians and information providers need to better understand the way patients and families use blogs, and the role blogs play in managing one’s illness. Further research is warranted both to facilitate understanding the experience of patients outside of the clinical arena and to enable use of the resource to keep up with patient’s needs and activities.
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