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.

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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.

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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.

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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.

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

What Medical Journals and Authors Can Do to Debunk Health Misinformation

In their article “Counteracting health misinformation” Paul Armstrong and David Naylor argue that “medical misinformation is nothing new but has become pervasive.”

Multiple digital sources represent a “new frontier” without editorial oversight or curation. Nearly anyone can say almost anything and be taken seriously at least by some consumers. With billions of individuals online every day, health misinformation can spread at a rapid pace. Worse, exciting falsehoods apparently spread faster than boring truths on social media.

General enhancements of science literacy are the province of educators and policy makers at all societal levels, and represent both a form of immunization against broader misinformation and a long-term investment in a better-informed citizenry. On the other hand, physicians and medical journals could have involvement with health-specific inoculation by fostering science literacy and education about human health and illness.

They provide a useful list of strategies medical journals and, I would add, authors could consider. Here it is:

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Webinar: Digital Strategies to Find the Right Journal for Publishing your Research

There are tens of thousands of academic journals to choose from. Submitting a paper to an unsuitable journal is a key cause of article rejection, but it can be difficult to narrow down which journal is best suited. This is why we created the following webinar. It provides an overview of digital tools (such as https://findmyjournal.com, https://journalfinder.elsevier.com, and https://journalsuggester.springer.com)as well as initiatives that help researchers select the right journal for their manuscript to increase their chances of article acceptance. You can find all recourses on the Digital Scholar Program page.

Here is the webinar video…

Webinar: Social Media and the 21st-Century Scholar: How Researchers Can Harness Social Media to Amplify Their Career

Improving health care requires better dissemination of research discoveries to reach practitioners, patients, and the public. Teresa M. Chan, MD, MHPE, from the McMaster University in Ontario, Canada shares some advice and great examples. She argues that it is “incumbent on scientists and scholars to use every tool in their armamentarium, including social media, to reach their intended audiences.” You can access all resources on the Digital Scholar Program page.

View the webinar here…

Webinar: Creating an Effective Study Recruitment Webpage

A compelling description of a research study online is critical to attracting participants. For many websites, commercial or not, significant visitor traffic comes via search engines such as Google. According to Pew Internet Research, most Internet users start at search engines to search for health information.

This webinar highlights the steps required to develop a study webpage using the publishing tool of the USC Clinical Studies Directory. The study pages are designed to help patients and their families who search online to find ongoing clinical studies at USC and to contact the study team. 

The webinar also included general tips for increasing the discoverability of study pages and developing effective study page content, for example, search engine optimization (SEO), which is an important tactic that involves selecting popular keywords for a study title and description to increase the chances of being found by online users. SEO is a well‐known concept in the marketing world to improve search rankings of web content. All of the related resources can be found on the Digital Scholar Program page.

View the webinar now…