When Texting Remember Spelling Counts So Does Punctuation and Grammar

Muench, Stolk-Cooke, Morgenstern, et. al. out of the Department of Psychiatry at Columbia University College of Physicians & Surgeons have published an original paper “Understanding Messaging Preferences to Inform Development of Mobile Goal-Directed Behavioral Interventions”.

The goal of this study was to determine what if any were global messaging preferences existed for various types of language content. In other words do readers of text messages prefer certain words and linguistic style when seeking to achieve a personal goal.

Results of this study indicate that there are clear user preferences for certain types of message characteristics over others, underscoring the importance of attention to message structure, linguistic content, and overall tone in the development of messages for goal-directed behaviors.

Participants indicated an overwhelming preference for messages that were accurately spelled and grammatically correct over messages that included textese or contained grammatical errors.

The more we know about the why people search and use the Internet for healthcare and understand how these same individuals respond to new information the better we can be at delivering knowledge and guiding learning. Which in the end is what healthcare is about transferring HCP knowledge to the patients in order to drive behavioral changes and improve outcomes. 

Online Support Groups Are Not Everyones Cup of Tea

Batenbury and Das out of VU University Amsterdam have an original paper in JMIR “Emotional Coping Differences Among Breast Cancer Patients From an Online Support Group: A Cross-Sectional Study”. The authors had 184 Dutch breast cancer patients complete a questionnaire examining activity in peer online support community. They wanted to determine if the effects of online support group participation is driven by patients’ ability to cope or not with their reflection on the disease. 

The conclusion: breast cancer patients individual coping style drove their participation in online communities. Those who coped less actively had a lower sense of psychological well-being then patients who were actively coping. 

A potential explanation for the negative relation between the intensity of online participation and breast cancer-related concerns among patients with a more avoidant coping style is that these patients may be less able to cope with the negative content on online forums; they may be overwhelmed by the sad and frightening stories from patients in the same conditio

This fits with my first time experience as a caregiver for Donna going online through a local organization. I signed up and went to the lung cancer group. I nearly lost my dinner. The stories and posting about the horrific nature of the disease and treatment left me cold and broken. Subsequently when I was working with a counselor I was told nearly word for word what is above. I’m pleased to see the data supporting the anecdotal reporting. 

Patients, Caregivers, and Lung Specialists: Why They Go Online?

Romane Millia Schook, MD out of BU University Medical Center in Amsterdam published “Why Do Patients and Caregivers Seek Answers From the Internet and Online Lung Specialists? A Qualitative Study” in JMIR. The goal of the study was to determine the reasons why lung cancer patients and caregivers search the Internet for information and ask lung specialists questions on the Dutch Lung Cancer Information Center.

This was a qualitative study via telephone interviews about medical information seeking of 5 lung cancer patients and 20 caregivers who posted questions on the web site.

The diagnosis of lung cancer drove the behavior to seek information and ask questions of experts. The need for knowledge was critical. It is worth noting that these participants were email, banking, and information seeking individuals prior to the diagnosis. So online activities were not new. 

Information was sought during chemo, when there were changes in symptoms, disease progression, or needing to choose between two treatment options. The authors noted patients and caregivers would seek information once they had time to rest and think about what they were told or forgot what they heard. They sought to learn when they had to find a solution to a problem. Which matches why adults learn. 

Respondents searched for information related to lung cancer yet specific to their situation, to better understand the disease, prepare for future visits, become aware of the disease course and trajectory. Additionally they sought answers to questions that were directly answered by their physician. To confirm and learn. 

The author noted the differences between patients and caregivers which fit with our general understanding from various studies done by PEW etc. Patients searched for a minimal amount of information directed at symptoms and therapy and practical information regarding disease. Patients stayed away from end of life information. Finally patients sought hope in the form of others and support regarding disease management and care.

Caregivers were little information vacuums collecting copious amounts of knowledge. Though caregivers noted the need to be better informed about the disease it conflicted with the fact most information was difficult to understand or understanding it correctly. This group also sought information more frequently and specific to end of life and prognosis.

It was surprising to learn when respondents were asked why they were reluctant to ask their treatment specialist the same questions they sought answers to online respondents mentioned being ashamed discussing personal matters or indecencies within the office visit. Or they felt their specialists had little or no time between appointments. The convenience of using the Internet and the website was a factor to drive communications. Beyond convenience was a sense of open-mindedness, kindness, and empathy that respondents noted and valued in online communities.

On the down side for Internet usage specific to patients was the reality that there was a vast amount of information and that the greater the amount of information it took focus away from staying positive. (More is not better.) There does exist a tension between the knowledge the caregiver is finding and learning and the patient. That tension tends to focus on sharing too much with a patient and provoking a confrontation. From my caregiving experience I had to walked into that buzz saw when I shared information that did not add to hope. 

The present study adds knowledge to the information-seeking behavior of lung cancer patients and their caregivers during the lung cancer treatment trajectory and their reasons for doing so. Strikingly, the majority of respondents were caregivers. Our findings show the coping strategies of caregivers and patients towards managing lung cancer.

The more we know and learn how patients and caregivers approach knowledge acquisition and how they process it the better we can be in delivering learning to these problem solvers. There uptake of knowledge and its application to their lives will be the driving force in changing healthcare. 

Need More Proof Of the Echo Chamber in Online Support Groups

Trevor van Mierlo published and original paper in JMIR “The 1% Rule in Four Digital Health Social Networks: An Observational Study”. We all know there is the 90-9-1 principle (Pareto Principle) for Internet communities. Just to refresh our collective memories, 90% lurk, 9% contribute, and 1% are superusers. Mierlo wanted to know if this rule applies to moderated Digital Health Social Networks (DHSNs) whose mission is to facilitate behavior change (Problem Drinking, Depression, Smoking Cessation, and Panic Disorder). 

Four of DHSNs superusers drove over 74% of the content and generated the vast majority of posts while Lurkers generated limited or no network value. The authors recommend that healthcare organizations should recruit and retain Superusers. Call me old fashion but recruiting Superusers strikes as putting shills at the blackjack tables in Vegas to draw the suckers in. Additionally they note that to really fully understand the Pareto Principle and how it functions within support networks future research should look a how different indications, disease states or actor types behave and what are the demographic and psychographic characteristics. 

The more we can learn about online behaviors and how individuals react and function the better we will be to drive change. We don’t need to make everyone a Superuser as much as understand why some lurk and do they learn from lurking and how do they apply what they’ve learned.