Digital health content

Health content reaches the public on the web, by email, in discussion forums and through QR codes. A health website rests on the web's addresses and domain names. It is organised and worded for readers who mostly lack medical training and come to it to find something, it is made findable through its metadata, and it can be built from structured, reusable content. Its quality depends on the writers who write it and the clients who commission them. Email and forums carry conventions of their own.

The internet and the web

The internet is a global network of smaller networks, run by private or public sector organisations, that exchange packets of data according to standard protocols, so that, for its users, data are sent and received almost instantly. ¹ It carries several services, among them the web, email and instant messaging or two-way chat. ^{1, 2} The web was invented in the early 1990s by Tim Berners-Lee, then at CERN, as a way for physicists to exchange scientific information, and the World Wide Web Consortium creates its standards and guidelines. ²

A wiki is a website whose content is written collaboratively, run on open-source or paid-for software, and it can be restricted to members or public. ³

Web addresses and domain names

A website needs a domain name, a web hosting service and a method of creating HTML. ⁴ A web page is identified by its URL, which specifies its address. ^{2, 5} A web browser is a software application that finds and displays web pages. ⁶ A reader reaches a web page by typing its URL into a browser or by clicking a hyperlink, a reference to a web page that lets one piece of information on the web be linked to any other. ⁶

In a URL the characters before the first slash are not case sensitive, while those after it are. ⁵ The domain name is the part between http:// and the first slash, and it uniquely identifies the organisation on the internet. ⁵ In it, http stands for hypertext transfer protocol, punctuation separates the components, and www, for World Wide Web, is usually present but not always. ⁵ The owner chooses one specific part, which nobody else can be using at the time, and codes follow for the type of organisation and its country. ⁵ Common organisational codes are .com for commercial organisations, .edu for educational ones, .gov for governmental ones and .org for organisations that are usually non-commercial; a country code such as .uk marks the country, with no code for the USA; and second-level codes such as .ac.uk, .co.uk, .gov.uk, .nhs.uk and .org.uk mark the type of UK organisation. ⁷ Every computer on the internet has a unique numeric address, its Internet Protocol address, and the Domain Name System, a hierarchical directory of domain names, the computers they correspond to and those registered to use them, translates that address into a more memorable set of letters. ⁸ A domain name is registered with an organisation accredited by ICANN. ⁹

The online health reader

By 2008 pharmaceutical websites had been shifting rhetorically since the 1990s from a physician audience to a patient one. ¹⁰ The number of patients going online to learn about therapy options was increasing as online health information became more accessible, and patients with relapsing–remitting multiple sclerosis were increasingly encouraged by their neurologists to take part in choosing a therapy appropriate to their diagnosis and lifestyle. ¹¹ The growth of online information and of patients' access to it was changing who holds power within the patient–physician dyad. ¹⁰ A 2008 study of pharmaceutical websites on relapsing–remitting multiple sclerosis therapies argued that, as more patients went online to supplement information from their physician or to prepare for ever-shorter appointments, online health information had to be analysed closely to ensure that audience needs were addressed. Used appropriately, it argued, online health resources let patients make better choices about their care. ¹⁰ The study also argued that a national preventive approach could lead to earlier detection and a more proactive health care system, and that health communicators, especially those designing web-based health and pharmaceutical information, could have a great impact on the health care system by providing the right information to empower patients to take a proactive, educated role in their own care, ultimately helping patients and physicians form a partnership. ¹⁰

By March 2012 patients were increasingly looking to the internet for information about their disease and possible treatments, and the informed patient was a commonplace of modern healthcare, particularly prominent in oncology, where the diversity of treatment strategies with different risk–benefit ratios calls for a greater contribution from patients in guiding how their disease is managed. ¹² For someone making decisions about their own health, the bombardment of online information is overwhelming. ¹³

The abundance of health-related websites created the need for tighter control over their content, and organisations such as the Health On the Net Foundation were at the forefront of the drive to improve the quality and transparency of health information posted online. ¹²

In oncology, patient and carer support websites can be important tools that empower patients and their carers to become more involved in managing the disease. ¹² Some of the best of them in 2012 offered forums in which patients share their experiences, the insights and experiences of other expert patients, and downloadable tools such as treatment diaries and information leaflets, and a deeper understanding of patient segmentation let developers tailor the online experience by delivering targeted educational messages to identified patient segments, so that the information carried more benefit in the patient's eyes. ¹²

Digital health media are aimed mainly at the general public and at people without formal medical education, so the style should be adapted to that audience, and in some cases cartoons, videos, interactive programs or games can help deliver scientific knowledge more effectively. ¹⁴ The audience for public health awareness education includes not only patients, general practitioners and pharmacists but also caregivers, babysitters and patients' relatives with lower levels of literacy, so simple, concise and friendly information matters: what you see is what you get. ¹⁴

Site organisation and usability

The US Centers for Disease Control and Prevention reported in 2007 that usability tests of its previous website, which had been based on the organisation of the agency, showed that users found information only 54% of the time. ¹⁵ The redesigned site was organised by subject and user need, to be research-based, user-centred, performance-driven and collaboration-rich, for an audience of public health professionals, researchers, health care providers, the public, teachers and students, and pre-launch usability testing indicated that it should focus on data and statistics, because these were used across all user types. ¹⁵ By the agency's own report, searches of the new site were 22% more successful, and user satisfaction rose by 70%. ¹⁵ The improved site grew more popular among visitors searching for health information. ¹⁵

In 2007 a reviewer found Healthfinder, the US Department of Health and Human Services' consumer health gateway, easy to navigate because a title line on every page showed where the visitor was and had been, as in Home > Health Library > Prevention & Wellness > B > Back Injury, and clicking any linked part of it returned the visitor to that page. ¹⁶ An A-to-Z topic list appeared on all main sections of the site. ¹⁶ Its health library could be reached from the main navigation bar and from links on the home page and browsed by topic, its topic area was organised alphabetically into sections, and choosing a topic gave not only search results but also health news, frequently asked questions and links to related professional organisations. ¹⁶ The gateway also served particular readers in sections of their own: a Spanish-language section organised like its English counterpart, Kids pages of child-friendly interactive health information, and consumer guides to choosing doctors, prescriptions, hospitals, long-term care and health insurance. ¹⁶

The 2008 study of pharmaceutical websites on relapsing–remitting multiple sclerosis therapies judged the usability of three of them against five principal guidelines with twenty subcategories, drawn from web usability experts and from suggestions on pharmaceutical website design. ^{11, 17} The five were effectiveness, covering consistency in style, identification with examples, elapsed time of tasks, and education as against drug promotion; efficiency, covering ease of topic navigation, search options and indexes, organisation of topics, and mapping; ease of learning, covering ease of answering questions, learning new information, addressing user confusion, and defining technical terms; error tolerance, covering next-topic links, clear labels, home-page identification, and ease of returning when lost; and engagement, covering the user's wish to explore further, the site's encouragement of further exploration, unique information, and easy recollection of what was learned. ¹⁷

Two of the three sites were more usable than the third. ¹⁸ A site was more usable where it built identification with the user, let tasks be done quickly, addressed needs without frustration, covered its subject completely and presented information at a variety of levels to suit user need, which the study called single sourcing; it was less usable for patients where it alienated the user, lacked depth, treated important topics too briefly and covered too few topics. ¹⁸

Attribution, metadata and findability

Search engines crawl the web and store links to pages indexed by keywords, which a user's keywords retrieve, and some search engines are specific to medicine. ¹⁹ Metadata are data about data, such as descriptive information about a website. ²⁰ Metadata placed in the head section of a page's HTML, such as a context-rich title, the author and keywords defining the subject, increase the chance that the site is retrieved in response to a search. ²⁰ Where content on a website has been written by other people, their names and affiliations should be given with the date the piece was written, and documents attached to a website, such as Word, PDF or ODF files, still need full bibliographical details: author, affiliations, publisher, address of the publisher and date. ⁷

Structured, reusable content

In 2016 Healthwise, an evidence-based developer of consumer health information that provides patient instruction handouts, symptom checkers, decision aids and shared decision-making campaigns, was converting a large database of consumer health information, 40,000 online pages, into structured content. ^{13, 21} The project used the Darwin Information Typing Architecture (DITA) and a component content management system, with developers and engineers building, testing and implementing new tools, and structured content was defined there as "modular discrete pieces of information tagged with metadata so you can find it and reuse it". ^{13, 21} The aim was to make the content more versatile and nimble, and better adapted to the changing world of health information delivery. ^{13, 21}

Healthwise held that the benefits of structured content are worth the effort, and it wanted its content to have five properties. ²¹ Content should be modular, so that it can be used in different places; nonrepetitive, to benefit translation and localisation; focused, so as to answer specific questions; consistent across products, voice and language usage; and easily identified and found. ²¹ Medical test information is an example of reuse: blood draws come up throughout diagnostics, so instead of repeating the same information in many places Healthwise wanted to link to a single topic page, which removes the redundancy and keeps the information in one place, where it is easier to edit. ²¹

The work used four main programs. ²² XMetaL is structured authoring software whose tags indicate the text's structure; DITA is an XML standard for authoring and publishing structured content, with more specific tagging for topics, including specialised tags, and one of its strengths is being "product agnostic" rather than "product specific"; SDL is a component content management system for storing, organising and managing modular content; and Enterprise Vocabulary Net is a metadata management system that can be used to improve search and navigation. ²²

The work began by hand, with content analysts circling aspects and identifying topics on printouts from different products, aiming to turn large documents into focused DITA topics; they then built a content model deciding which information each document type required and which was optional, so that topics could serve every product. ²³ The topics were to bring five changes. ²³ Repeated language became language reuse; many links became fewer, more thoughtful links to definitions and media topics only; general formatting options became semantic meanings with specified tags; some metadata became additional metadata, including content types, aspects and concepts; and rigid, product-specific function became product-agnostic functional use. ²³

Healthwise reported that, as a result, everybody gets the information they want without having to plough through information they are not interested in. ²⁴ Topics can be found, identified and manipulated through their metadata, published singly or as part of a map to create new documents or to output to multiple channels, legacy content can be recreated when required, and the information is flexible enough to be reassembled and customised for each purpose, such as reviews and product publications. ^{24, 25}

Web writing from A to Z

One medical writer's A-to-Z checklist for web writing advises:

• Audience. Write only to the defined audience.
• Blog. Do not blog to fill space; include only relevant content.
• Cut out plagiarism. Cutting and pasting is not writing.
• Direct. Use active writing to be clear and direct.
• Edit it out. Avoid useless content.
• Fonts. Use eye-friendly fonts such as Arial, Verdana and Georgia.
• Graphics. Spice the page up with pictures, within the limit given under Images.
• Headings. Use plenty of heads and subheads to organise information and allow easy scanning.
• Images. Keep them to a minimum so that they do not distract from the content and the message.
• Jargon. Leave it out.
• Keywords. Use keywords and phrases and their variations for search engine optimisation.
• Less punctuation. Avoid overusing punctuation, which is often lost on a computer screen.
• Margins. Leave plenty of white space.
• Numbers and bullets. Simplify the format with numbered or bulleted lists.
• Objective. Determine what the audience needs to know.
• Plan. Give thought to what to say and to what action the reader should take.
• Quality control. Print a hard copy and proofread it several hours later in a new setting.
• Readability. Write at a low reading level to increase the number of people who can understand.
• Scannability. Write content that readers can understand by scanning alone, since no one fully reads web copy.
• Text blocks. Use short paragraphs to minimise scrolling.
• Uniqueness. Write unique content that is useful to the reader, since search engines look for unique content.
• View. Give the page a professional look, formatted to about 65 characters per line.
• Write tight. Say more with fewer words.
• X-rated out. Do not write for shock value.
• Yack. Avoid excessive, wordy, run-on sentences or topics.
• Zeal. Write expressively, but do not overuse adjectives.

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The quality of web writing and the clients who commission it

In one medical writer's view, most web writing appears dashed off just to fill the page and get the advertising message flashing. ²⁶

In another writer's experience, the quality of writing has gone down dramatically since the arrival of email and the internet: writers themselves let typos and poor usage through in emails and discussion-list postings, content mills have emerged, and big companies' websites give too little attention to writing and editing. ³⁰ The absence of limits on word count may be one contributing factor: print media had a word count because of budget constraints, websites have no limit, and experienced communicators know that fewer words are better than many and that it takes far longer to write short than to write long, but not all web designers and e-publishers understand communication or the importance of good writing and editing. ³⁰ Many young graduates who need work are trying to become writers without realising that training, practice and experience are necessary, so naive hiring managers on tight budgets end up hiring inexperienced people to produce copy. ³⁰ Another factor may be the impersonal nature of the internet: even social media sites give distance to so-called personal expression, and people seem to have an illusion of being invisible, which may lead them to care less about the quality of what they post. ³⁰ The same writer, without claiming to have all the answers, offers these thoughts on how writers can help turn the situation around: ³⁰

• Clean up one's own writing, even in personal emails and Facebook postings.
• Publish excellently written articles or postings on websites, blogs and discussion lists, so that people see the difference; experienced professionals should exemplify quality.
• Give well-researched presentations, to professional organisations willing to pay for them, on the differences between good and bad copy.
• Research a random selection of websites, critique the good against the bad writing with clear descriptions of why, and publish the results, perhaps by sending them to the websites critiqued.
• Create a consortium of advanced professional medical writers with extensive web experience, charged with addressing the problem.
• Volunteer to give presentations at local schools on the importance of good communication and the benefits of learning good writing and editing skills, perhaps on a careers day at a local high school.
• Write to an executive of each website with amateur writing and poor communication, pointing out the poor material and what makes it substandard; this is time-consuming, but if enough people complained, it might get a clean-up crew put to work.

³⁰

A third medical writer sees opportunities, though not easy ones, for freelance medical writers to help correct bad health writing on the web, and holds that the greatest barrier to improving it is getting the owners of websites, rather than the writers, to recognise that they have a problem. ³¹ Because there will always be bad writers, the work is to get the owners of poorly written sites to stop hiring them and to reject poorly written content, by showing them that good writing produces better results and that better, more expensive freelance medical writers are worth the investment. ³¹ The answer proposed is one website at a time: good freelance medical writers who do not yet write for the web should put it on their radars, and those who already do should do more of it. ³¹ Freelances should market themselves to the medical communications companies and medical advertising agencies that develop websites for clients, whose sites are not usually the bad ones though they can be, and to the medical associations and societies that often develop their own content. ³¹ On finding a company or organisation with a bad website, they should look at its competitors and, where those sites are better, use the comparison to start a discussion with the owner. ³¹ In this way freelances can improve both the quality of health-related writing on the web and their own bottom lines. ³¹

Another writer holds that educating clients about good web content is often part of a web writer's job. ³² Clients hire a writer for expertise but often do not understand how different web content is from other kinds of writing or how important it is to get right, so sharing evidence of how people use the web and of what good web content is helps, done gently to avoid hurting feelings and egos. ³² A writer will probably not convince a client of everything: a client may, for example, insist on physician rather than doctor on a website for patients, and the advice is to accept such quirks and preferences and to write the rest of the content so well that users still want to spend time on the site. ³² A freelance writer involved in several website projects finds the learning curve for many stakeholders high, especially on projects that must pass medical and legal approval, and holds that clients need to be given samples of good web postings and taught to recognise the differences. ³³

Reaching the public across channels

In 2007 an e-health expert at the Centers for Disease Control and Prevention held that a website or a printed document alone was no longer good enough, and the agency's channels by then included podcasts, streaming video from broadcast studios it had installed, downloadable e-cards that generated many downloads, a hotline answering health questions, and influenza material sent to health bloggers in the hope that they would write about it. ¹⁵ The agency was also researching user-generated tags, e-games and podcasts, had created a virtual world called Whyville for children aged 8 to 12, and expected to establish a presence on MySpace, and the same expert held that it had to move toward Web 2.0 to increase dissemination and potential impact. ¹⁵

Healing Thresholds, an evidence-based autism therapy website, was created as a communication strategy to engage the diverse and often divided autism community and to educate it about evidence-based strategies for treatment. ^{34, 35} In 2009, free to its users, it carried eleven fully referenced summaries of commonly used autism therapies, over 650 lay summaries of recently published scientific articles on those therapies and 650 summaries of news stories about them, and every research summary was written by a medical writer with a PhD in the medical sciences. ³⁵ It received over 30,000 unique visitors a month, who stayed an average of over two minutes; most found it through search engines; and its most popular page was the glossary, which contained over 400 words. ³⁶

Over 15,000 people subscribed to its free weekly eBrief summarising the week's updates, which had an open rate of almost 20%, and 75% of the respondents to a survey of subscribers had used the eBriefs to inform therapy decisions. ³⁶ The site had almost 250 followers on Twitter and almost 400 fans on Facebook. ³⁶ After more than two years it had built successful relationships with social networking groups, the American Academy of Pediatrics and some targeted autism support groups. ³⁷ Sustaining the site on the internet posed challenges. ³⁵

Email and discussion forums

Writing emails is so everyday that it is easy to forget that their content and style need careful thought. ³⁸ An email lacks the formal structure of a letter and the cues of speech, and messages tend to be short, so a message can easily read as brusque or even rude; it should be written so that it cannot be misunderstood, with correct spelling and grammar, since readers judge the writer by them. ³⁸ Email is not secure, and a message and its contents are effectively in the public domain: a recipient can forward a message to anyone, and messages in email discussion lists are crawled by search engines, so great care is needed before including confidential, private or sensitive information, particularly patient information, financial information, or other people's contact information or personal details. ³⁸ Copyright still applies to an email, which its writer owns, so forwarding a message or including published quotes can break someone else's copyright. ³⁹ Emails are official documents, so copies of important messages should be kept. ³⁸

Rules of appropriate behaviour in email are called netiquette, and they include these: ³⁸

• Use meaningful subject lines.
• Use plain text format, not HTML.
• Use a short, informative signature, such as postal address, phone and fax numbers, email address and website URL.
• Think carefully about sending attachments: ask people whether they would like the document emailed to them individually, or post it on a website and email the URL.
• Do not include all the previous emails in a reply or thread, only enough to make the nature of the earlier correspondence clear.

⁴⁰

Email discussion lists have rules of their own, set out on the list service's website: do not cross-post to a large number of lists, because many people belong to more than one; do not send attachments; and anyone who uses out-of-office messages should temporarily suspend membership of a list before going away, since otherwise everyone on the list receives an out-of-office message in response to every posting. ³⁹

Discussion forums include online chat or instant messaging, internet forums, newsgroups, bulletin and message boards, and email discussion lists; online chat is real-time and the others are asynchronous, and email lists push messages to subscribers while other forums have to be visited. ⁴¹ Many forums serve leisure activities, but forums were increasingly used in professional contexts, among them health topic forums for patients, carers and health professionals, and virtual classrooms and discussion lists in education. ⁴¹ Netiquette like that for email applies to forums: a member keeps to the forum's subject, is courteous and considerate, and respects other members' opinions, privacy and copyright; in a moderated forum the manager checks that messages keep to its netiquette and acceptable-use policies, with sanctions that run from admonishing unacceptable behaviour to terminating threads or cancelling a person's membership, and whoever manages a forum needs to establish those policies and the moderation procedures. ⁴¹

QR codes

In 2013 QR codes were almost ubiquitous, on airline boarding cards, many retail products and even mugs and T-shirts used as marketing tools. ⁴² QR stands for Quick Response; the code has its roots in the Japanese automobile industry and caught on in other business sectors, it is sometimes called the 2D barcode although there are many other codes of its kind, and a single code can store thousands of alphanumeric characters, such as URLs, contact details and text messages. ⁴² Reading one needs a smartphone with a camera and a scanning app, free for most smartphones; a code can be scanned from paper, a computer screen or another phone's screen, scanning takes only a few seconds depending on the app and the complexity of the code, and the information can be saved on the phone. ⁴³ Many code generators are available, some free and some with price tags. ⁴⁴

One medical writer held in 2013 that medical writers should take a closer look at QR codes because the codes had made their way into the scientific and medical fields, with uses such as these: ⁴⁵

• Popular and scientific media. A code can link to a broadcast, as one did to a BBC Radio 4 programme on clinical trials, with a logo incorporated into the code to personalise it, and medical and scientific journals were using codes to embed links and additional information in publications, as on an article in the July 18 issue of the Journal of the American Medical Association whose upper right corner carried a code captioned "scan for author video interview".
• Healthcare. Some doctors used codes to market their services and engage their patients, with links to online appointment systems or to patient testimonials on YouTube, and the feasibility of digital prescription with QR codes was being evaluated in Taiwan.
• Medical information. In France, for an annual subscription, a company converted a person's most important medical and personal data into an emergency code printed on stickers for helmets, cars, wallets, medical identity cards and phones, with the information stored on a server approved by the Ministry of Health and the code readable only by medical professionals using a restricted app.
• Genetic information. A DNA sequence can be stored in a code that is easily stored, exchanged or printed and used to label biological samples for identification and tracking.

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