A Patient Persective on Web-Based Health Information and How It Can Save Lifes

Andre Kushniruk was diagnosed with advanced-stage tongue cancer in 2017. I came across the article about his patient journey, where he reflects on challenges around accessing the best possible health information and how that information needs to be used and acted on to lead to the best possible patient health outcomes. Here are some interesting lessons Andre shared that provide good food for thought:

• A need for
  • …”accessible information for patients on the Internet.” Open access journal formats are as important as the framing of medical information in general.
  • …”knowledge about how to access the right information. This is the advantage I had of being a specialist, but it should be made more accessible through improved user interfaces for those who do not have a background in health care.” Andre also mentioned “human navigators” who could help patients with funding credible information online. For him, his wife took on this role, a health informatician who decided to apply her knowledge and skill in searching the Internet to examine the assessment of the specialist.
  • …”access to the best possible care and treatment plans, and the ability to identify the most appropriate and best physicians available. Here the internet was what led me to locate a surgeon capable of turning my situation around.”
  • …”improved electronic health (eHealth) literacy to help in integrating technological skills with patient reasoning about critical health conditions.”
  • …”credible, up to date, and substantiated evidence-based information from anywhere in the world.”
  • …”new systems and technologies to speed up wait time and diagnosis, and to obtain second opinions (eg, easily accessible virtual second opinion systems).” Andre told me that there are a few second opinion systems for physicians but less for patients.
  • …”patients to be more informed about choices and statistics, including the meaning of survival curves in relation to different treatment options.”
  • …”atients to be able to critique different treatment options and be provided with independent advocacy and support in doing so.”
  • …”patient education about how to select reliable and reputable information sources, requiring that information from YouTube and other such sources be curated or vetted to be up to date and useful for patient decision making.”
  • …”integration of information and expertise, whether physical or technological (eg, a virtual tumor discussion board).”
  • …”information about, and access to, life-saving treatment methods that may not be available in a patient’s local area.”
  • …”patients to continue to provide support and advice to other patients over the internet using social media and virtual communities.” Andre mentioned the importance of learning from other patients on social media about their experiences with the treatment and life after surgery. On Pinterest, for example, he learned about things that patients would still be able to eat after treatment.

Keep reading (link to the original article)

Misconceptions about Disinformation and Manipulation Online

Good food for thought by Kate Starboard who explores misconceptions around disinformation online and “coordinated inauthentic behavior” with a focus on polictics. This is highly relevant to clinical research, disease prevention, and healthcare as well. Some of the key takeaways:

• Those behind disinformation campaigns purposely entangle orchestrated action with organic activity.
• Disinformation campaigns promoting multiple, often conflicting, views.
• Disinformation is not simply false information, it often layers true information with false.
• Disinformation stems mainly from agents producing false content (paid ‘trolls’) and automated accounts (‘bots’) that promote it. Members of the audience become willing but unwitting collaborators who are unaware of their role, but who amplify and embellish messages.
• The message of a campaign is the same as its goals.
• Disinformation targets only the unsavvy or uneducated, that it works only on ‘others’. Disinformation often specifically uses the rhetoric and techniques of critical thinking to foster nihilistic scepticism.

• Kate concludes that “as researchers and policymakers, we have to go beyond trying to measure the impact of individual disinformation campaigns using simple models of inputs (for example, messages posted by bots or trolls) and outputs (such as likes, retweets or even votes). We need models that can encompass how disinformation changes hearts, minds, networks and actions.”

Keep reading

A Software Tool Aimed at Automating Aspects of Social Media-Based Health Promotion and Education Research

Colleagues and I recently published an extenced version of Trial Promoter. The latest extensions of the tool are designed to support health promotion research in the digital age. Here is the paper in a nutshell:

Background: Social media offers promise for communicating the risks and health effects of harmful products and behaviors to larger and hard-to-reach segments of the population. Nearly 70% of US adults use some social media. However, rigorous research across different social media is vital to establish successful evidence-based health communication strategies that meet the requirements of the evolving digital landscape and the needs of diverse populations.

Objective: The aim of this study was to expand and test a software tool (Trial Promoter) to support health promotion and education research by automating aspects of the generation, distribution, and assessment of large numbers of social media health messages and user comments.

Methods: The tool supports 6 functions (1) data import, (2) message generation deploying randomization techniques, (3) message distribution, (4) import and analysis of message comments, (5) collection and display of message performance data, and (6) reporting based on a predetermined data dictionary. The tool was built using 3 open-source software products: PostgreSQL, Ruby on Rails, and Semantic UI. To test the tool’s utility and reliability, we developed parameterized message templates (N=102) based upon 2 government-sponsored health education campaigns, extracted images from these campaigns and a free stock photo platform (N=315), and topic-related hashtags (N=4) from Twitter. We conducted a functional correctness analysis of the generated social media messages to assess the algorithm’s ability to produce the expected output for each input. We defined 100% correctness as use of the message template text and substitution of 3 message parameters (ie, image, hashtag, and destination URL) without any error. The percent correct was calculated to determine the probability with which the tool generates accurate messages.

Results: The tool generated, distributed, and assessed 1275 social media health messages over 85 days (April 19 to July 12, 2017). It correctly used the message template text and substituted the message parameters 100% (1275/1275) of the time as verified by human reviewers and a custom algorithm using text search and attribute-matching techniques.

Conclusions: A software tool can effectively support the generation, distribution, and assessment of hundreds of health promotion messages and user comments across different social media with the highest degree of functional correctness and minimal human interaction. The tool has the potential to support social media–enabled health promotion research and practice: first, by enabling the assessment of large numbers of messages to develop evidence-based health communication, and second, by providing public health organizations with a tool to increase their output of health education messages and manage user comments. We call on readers to use and develop the tool and to contribute to evidence-based communication methods in the digital age.

Keep reading

First Preprint Server for Sharing Initial Versions of their Clinical Research Manuscripts

The idea is not new. For quite some time, physicists and biologists have shared papers before they appear in a peer-reviewed journal. Now, medRxiv will be posting clinical research submissions.

Preprint advocates say they are a way to get findings out to the research community quickly and gather feedback before the work is published in a journal. Physicists have shared preprints online for decades, and many biologists have joined them since bioRxiv launched in 2013. But clinical researchers have been reluctant to embrace preprints, in part because of the harm that could result if doctors change clinical care or patients try treatments on their own based on findings that haven’t been vetted by peer reviewers.

The new site aims to address concerns about posting draft papers on health science research involving human subjects by screening them carefully for select criteria and prominently labeling the papers as unreviewed. The site is now taking submissions, and an initial batch of papers should debut publicly on 25 June.

Keep reading

Webinar: MedEdPORTAL, a Peer-Reviewed Journal and Online Resource for Teaching and Learning Resources

Many researchers are involved in teaching activities that can also be counted for scholarly credit. MedEdPORTAL is a peer-reviewed journal of teaching and learning resources in the health professions that publishes teaching and learning modules. The journal focuses on resources that have been implemented and evaluated with medical or dental trainees or practitioners. The platform also serves a second function. Many educational institutions develop similar curricula. MedEdPortal represents a useful repository of educational materials that allows academics to leverage the work of others. Check it out

View the webinar to learn more about MedEdPortal

Additional resources can be found here

Webinar: Developing a Comic based on your research

This webinar highlights a simple framework for translating a complex scientific publication into a broadly accessible comic format. Comics can be more easily understood by a wide variety of audiences. This is important as scientists are increasingly challenged to communicate their work to more diverse audiences.

This webinar provides some background on the topic and a framework for developing a conceptual foundation, a scientifically-relevant setting and characters, as well as a detailed storyboard.

Watch the video now

More resources can be found here.

Social Media and Opportunities for Research, Education, and Healthcare

I recently was invited to write a review for Current Opinion in Rheumatology to summarize current trends in using social media for research, education, and healthcare. The review highlights four areas in the biomedical field that social media has infused with new ideas:

1. The use of patient-generated health data (PGHD) from social media to learn about their disease experience and networks that are not otherwise easily captured through traditional surveys or administrative data.
2. The use of social media for delivering health awareness and education campaigns, as well as health interventions to both, reach large and hard-to-reach segments of the population
3. Social media for enhancing research participant recruitment.
4. New training approaches for physicians and trainees in the digital age.

As I worked on the project, I also noticed the convergence of social media and biomedical publications since 2007, when the first peer-reviewed biomedical articles related to ‘social media’ emerged (Fig. 1).

Keep reading

How Scientists Challenge Public Stereotypes Using Selfies

Don’t miss this paper by Jarred et al. who show that “scientists posting self-portraits (“selfies”) to Instagram from the science lab/field were perceived as significantly warmer and more trustworthy, and no less competent, than scientists posting photos of only their work.” This data is encouraging. As the authors put it, the results suggest that self-portraiture by science professionals on social media “can mitigate negative attitudes toward scientists.” Keep reading

Creative Informatics

I recently learned about the concept of “creative informatics”. It is an interesting new initiative out of Edinborough that fosters collaborations between creative industries, research communities, and policy-makers. The goal is to develop data-driven innovations and independent evidence and analysis that can inform decision-making across the industry and underpin future policy decisions.

Project leaders suggest that the initiative could lead to new commercial products for home entertainment, new ways to buy products and services by experiencing them first, and innovative online experiences for remote participation. So, I wonder how the concept of creative informatics could improve aspects of clinical and translational research, for example, aspects of research participant engagement and recruitment online, the consent process, and laymen reporting of clinical trial results to improve the trust in and perception of the clinical research enterprise. Keep reading to learn more about Edinboutohh’s initiative

Evaluating Patients’ Perspectives on Social Media

While much of the chatter on social media might seem superficial, it also includes word-of-mouth advice passed along from patient to patient and a narrative about their disease experience. A growing number of research studies uses social media to learn about patient’s views, health outcomes, and clinical research experiences.

The recent report by Menzies and colleagues in the British Journal of Dermatology is an excellent example of that but it also highligts a critial issue. The authors described commonly discussed and personal patient experiences of psoriasis treatment on the social network Twitter. While they cogently describe their findings, there were a few points in methodology which should be included in this type of social media research.

First, it is unclear how the authors reliably identified tweets from patients. Social media is a pool for commercial and bot-like content. Bots (“robots”) are purely automated accounts or human-assisted automated accounts (“cyborgs”). The authors did not discuss whether and how they controlled for bias in their analysis introduced by tweets from commercial groups and bots.

Similarly, it is unclear if the dataset included retweets or only original tweets, which is important because many tweets by Twitter users are retweets or replies to commercial tweets, of which bots generate a large number.  

In an ongoing study, we found that 75.51% (52301/69264) of psoriasis tweets in English sent between February 2016 and October 2018 by users in the U.S. were of commercial or bot-like nature. Similar results have been reported for Twitter messages about e-cigarettes⁴. Using standards for social media data research is critical as well as clearly reporting the data collection and quality assessment. Tools such as “Bot or Not?” help with identifying commercial and bot-like content, in this case, to discern patients’ perspectives.

Link to peer-reviewed article