Patient Groups As Trusted Information Sources
Since the birth of the internet, it’s been more and more important to sift accurate medical information from hype and misinformation. The ongoing challenge is to find an effective way of kite-marking a site to show that it is safe to use. Generally, there is little independent funding for regular verification of certificates issued. In this environment, people may turn to patient groups as the most trusted source of information.
Health On the Net
It’s hard to imagine a time before Health On the Net. The not-for-profit organisation was set up in 1995 to promote transparent and reliable health information online. Although it’s best known for its HonCODE certification which badges more than 8000 websites, its own site is now home to a range of tools for safer health searching.
Although no certification process can be perfect, the HonCODE aims to ensure that providers of healthcare information commit to their 8 core principles:
- Who authored the content?
- What is the site’s mission?
- Who is its audience?
- How is data treated?
- What are the sources of the content?
- How old is the information?
- Is all the information presented equally?
- Is the contact information correct and complete?
7: FINANCIAL DISCLOSURE
- How is the site paid for?
- Have the authors reported any conflicts of interest?
8: ADVERTISING POLICY
- Are ads clearly identifiable?” – Health On the Net
Thinking about most sites and materials we see from patient groups, on the whole many would meet these criteria. However, it’s often not clear who specifically created the information, and when it was last updated. The best sites make it clear both when the materials were published, and when they are next due to be reviewed. Health On the Net has a parallel certification process for health apps which we’ll look at in more detail in a future blog.
NHS Information Standard
In the UK, the National Health Service Information Standard used to be certified, enabling organisations to add the logo to their materials to show that their processes meet the criteria required. Although the Information Standard is now about self-assessment, one of its strengths is the emphasis is puts on patient involvement in developing materials.
- “Information is created taking into consideration the health literacy and/or accessibility needs of the population it is aimed at
- Jargon is not used and medical terms (when used) are explained
- End users are involved at the outset and throughout in the production and their input is actively used.
- People are encouraged to give any ongoing feedback after the product has been published and this is acted upon as appropriate.” – UK National Health Service Information Standard
Although detailed industry commitments to provide medical information vary across the world, generally there are strict rules in place to ensure that any medical information provided by pharmaceutical companies is accurate, transparent and up to date.
This however can create a challenge for patient groups co-creating materials with pharmaceutical companies. Not only does it mean that approvals of materials can take a long time, but also the project may be withdrawn quickly if the company decides not to maintain their commitment. Checking and replacing out of date information can be complex and time-consuming.
Although the US-based organisation Quackwatch is a product of the Sixties, its teams of volunteers now focus on improving online health information quality. The site links to a range of sites on specialist subjects including dentistry, nutrition, cancer, autism and allergies. Each site identifies sources of misinformation, myths and poor content. Although not without controversy, the organisation does highlight some of the more outrageous and exploitative aspects of health information on the web. In the absence of any effective legal process to pursue health information malpractice, long may the volunteers continue to quack.