DIY Guide to Assessing Medical Information and Research (Part 1)


Sunday December 1, 2013 | Abby White, WE C Hope CEO


This two part blog gives simple guidance that can help you effectively read and assess medical information, medical news stories and published research articles.

An individual without information cannot take responsibility. An individual with information can't help but take responsibility.

Evaluating Medical Information

Newspapers, television news programs and the Internet are awash with reports of advances in medical research, new therapies, and miracle breakthroughs. More articles, especially online, promote complimentary or alternative therapies that claim to prevent or reduce side effects or even cure the illness.

Retinoblastoma studies vary widely in their design and quality. Results often contradict other reports and conclusions may be sensationalised, causing confusion and anxiety among family members, friends and medical professionals.

The Internet can be an excellent learning resource, but also a minefield.  Many websites provide accurate, balanced information, while others present inaccurate, biased content, myth and hype.  Separating fact, half-truth and fiction is challenging.   However, with common sense, attention to detail and time, it is possible to evaluate and make informed health care decisions.  Follow these guidelines when reading news articles, or surfing for information about retinoblastoma or other health topics.

Source

All websites providing medical information should clearly state their source. Identify who is responsible for the content with these seven simple steps.

  • Read the “About Us” page: to determine who runs the site (e.g. government, nonprofit, professional organization, university, hospital, company or individual).
  • Identify the Author: This information may be provided directly below the title, below the article, in an editorial policy, or in a disclaimer or mission statement.  An editorial policy or mission statement will usually be found in the About Us section.  A disclaimer is usually linked from the bottom of each page on the site.
  • Qualify the Author: Is this an individual affected by retinoblastoma, a doctor who treats Rb, a medical professional with eye or cancer care experience, a research scientist?  What level of expertise do they have?  If only a name is provided, Google the author to establish the person’s area of expertise. Websites often publish information from other sources. If the individual or entity running the website did not write the information, the original source should be clearly stated.
  • Identify the Reviewer: If the content was not prepared by a medical professional, was it reviewed by a doctor with appropriate knowledge and expertise?  If the site has an editorial board, do its members have front-line experience in treating Rb?
  • Clarify statistics: do the numbers come from a reliable source?
  • Qualify opinion: If information appears to be a personal opinion, is it unbiased?
  • Find Contacts: Websites should provide at least two modes of contact.  Use caution if you can’t identify the website owner or their contact details.

Currency

Scientific and clinical research means knowledge, evidence and their impact on treatment is constantly evolving.  Guidance on supporting a child with an artificial eye may be valid many years later, but treatment information must be current.  So check that the content you are reviewing is up-to-date.

  • Check dates: Reliable websites usually publish a “last reviewed / updated” or copyright statement.  You can usually find this at the foot of the page.  If the page has not been reviewed in the past year, look for more recent information.
  • Check for broken links: Click on a few links on the site. If many links do not take you to the stated destination, the website content is more likely to be out-of-date.

Clarity

Be wary of websites peppered with obscure, technical jargon, claims of miraculous, dramatic results that seem too good to be true, or information without context.

  • Be alert to sensationalism: journalists, marketing professionals, hospital and university media offices, and biased individuals tend to present stories in a way that will provoke public interest or excitement, often at the expense of accuracy.
  • Consider context: Does the information provide background against which to assess it?  For example, does an article about a research breakthrough describe how it impacts children in treatment today?
  • Look for plain language: A website providing medical information to the public should use simple language, and avoid technical jargon.  A glossary using plain language should be provided to explain any technical terms.  Be wary of authors using aggressive, inflammatory language.
  • Get a second opinion: Carefully evaluate “breakthrough” cures with additional research using the guidance provided in the part 2 of this article.

Bias

A website may not provide accurate, balanced information if the owner or content author has something to gain from it.  Bias may exist if the content is authored by:

  • an individual promoting a therapy of which they have personal experience;
  • a doctor promoting their own research and / or targeting potential patients;
  • an institution promoting research by its faculty;
  • an organization linked to a single hospital or university; or
  • a company promoting its products or services.

There are exceptions to these scenarios.  Vested individuals, organizations and commercial entities can offer accurate, balanced and valuable information.  However, when we hope for something with all our heart, we often see only what we want to see, and at such times we must be especially mindful of potential bias.

  • Check funding: is the site supported by public funds, donations or advertising?
  • Evaluate independence: Is the information balanced and neutral? For example, if the website is owned by a doctor promoting their services, does it present all treatment options equally?  If a research report is published by the individual or institution that conducted the study, does it present findings in context of clinical research phases, current therapies, side effects and benefits to the whole child?
  • Assess adverts: are they clearly labelled as “Advertisement” or ” Sponsored Links.”  Can you separate commercial content from non-commercial content?  Do any links within apparently non-commercial text take you to commercial content?

Privacy

Independent information should be provided freely, without requiring the reader to provide personal data.  Personal data is information like your name, address, date of birth, gender, profession, medical history, family details and credit card details.  The website should carry a publicly accessible privacy policy that clearly states what information they collect, and how they handle personal data.

  • Read the Policy: This should be linked from the bottom of each page. Check whether the website respects and protects your privacy.
  • Evaluate Registration Forms: If the website requires you to register before use, note the information you must provide before you can view content. If you must provide personal information (especially card details), read the privacy policy before completing the form, to determine how they may store and use your data.
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