The Internet and people with mental health problems

The first true mental health websites were launched in North America in the mid-1990s. These included Mental Help Net - set up in 1995 (9) - and Internet Mental Health - set up in 1994 (10). Sites which focused on specific conditions, such as Schizophrenia.com, began to appear shortly afterwards (11). The latter included an Internet based discussion forum providing a space for people diagnosed with schizophrenia to share information, advice and support.

Europeans and Australasians followed the North American lead a few years later, as more and more people began to recognise the potential of the Internet.

Growth

In the last few years the Internet has grown rapidly to become an important means of disseminating information for many agencies in many countries, especially in the developed world.

There has been a huge increase in the number of email users and email services, including those provided by agencies such as Yahoo (12) or MSN (13). This has made it much easier for anyone with an interest in mental health issues to contact other people. There has also been a rapid growth in the number of online forums dedicated to mental health issues or which include discussions about mental health. For example in November 2002, Google listed 7 forums just on the subject of depression. It also provided links to 2 million messages on the same subject. (14)

There has been an equally rapid growth in the number of mental health websites. The Open Directory (DMOZ) currently lists over 6,000 Mental Health sites. (15). Google lists nearly 12 million mental health pages.

In the United Kingdom, a wide range of nationally important organisations now run their own websites, including the Department of Health (16), the National Institute for Mental Health (England) (17), the Royal College of Psychiatry (18), Mind (National Association for Mental Health) (19), The Sainsbury Centre for Mental Health (20), and the Scottish Association of Mental Health (21).

They are not alone. Throughout the voluntary, statutory and commercial sectors new sites have also been developing fast and it’s happening at a local level too, with smaller organisations and individuals setting up their own home pages and web sites.

There has also been a growth in generic health sites and forums, such as NHS Direct Online (22) and Net Doctor (23). These provide information about a number of medical conditions, including the most common forms of mental health problems.

The rapid growth of the number of sites on the Internet provides strong evidence of the importance of this new medium. Agencies have clearly understood the Internet offers an opportunity to reach far larger numbers of people than would have been possible before.

Diversity and focus

There is now a huge diversity of websites and forums, with many focusing on specific issues or aimed at specific groups. For example, there are now websites and forums on all of the most common mentalhealth problems such as stress, anxiety and depression.

There are also websites on less common problems, such as narcissistic personality disorder - N-courage (24) - or new-variant CJD - The Official Mad Cow Disease Home Page (25). In addition, there are websites and forums on a wide range of issues related to mental health problems, such as forms of treatment and therapy - Alternative Mental Health site - (26) and mental health legislation - the Hyperguide to the Mental Health Act (27).

There are also websites and forums for specific groups, such as people who hear voices - the Hearing Voices Network (28) - or who self-harm - the National Self Harm Network (29). In addition there are websites and forums for people who describe themselves as survivors of mental distress and/or the mental health system - UK Survivors Network (30). Others forums and sites concentrate on the needs of relatives and carers. These sometimes focus on fundraising for research into causes and treatments and providing support through self help groups.

Design and functionality

Mental health websites and forums vary enormously in what they look like and the technology they use. Some sites consist of nothing more than a few pages of text. Other sites have clearly been designed by people who have just learnt to use a graphics package and are keen to show what they can do.

Many websites make use of standard Internet technology, such as search engines, guestbooks and so on. A few sites use developing technology in a more professional and sophisticated manner. A good example of this is @ease (31), a website for young people under stress or worried about their thoughts and feelings. Hosted by Rethink (32) and using cartoons, this site takes the visitor on an interactive journey with a group of young people. By using cutting edge technology and a narrative style, the site aims to make the issues more interesting and relevant to the young people it is attempting to reach.

Interactivity

Many websites and forums try to engage their users by providing some kind of interaction. For example:

• The Sainsbury Centre for Mental Health sends out monthly email newsletters to subscribers to inform them about new developments on their sites, news items and events. (33)
• The Mental Health Foundation sent an animated cup of tea to its subscribers in order to raise awareness of stress at work. Recipients were encouraged to take a five minute break and post on their own cup of tea to friends and colleagues. (1)
• The depression website STAND tries to involve its visitors through the use of questions or questionnaires. (34)
• The Community Care Journal Online recently hosted a discussion on the Mental Health Bill with Louis Appleby, the mental health czar for England and Wales (35)
• Net Doctor encourages its visitors to become members of one of its virtual communities. Members share a common interest and are able to interact with each other on a web site designed to provide a forum for discussion. Net Doctor currently has 10,000 registered members of its Depression community. (23)

By interacting with their users in these different ways, forums and websites encourage repeat usage and create loyal customers. They also enable people using the service to learn from other users of the same service, in effect creating a virtual community.

Numbers of internet users

It is very hard to be sure how many people with mental health problems are using the Internet. People don't always broadcast the fact that they have a mental health problem when they send an email, visit a site or participate in a forum.

The fact that you can remain anonymous when using the Internet is a major plus for people with mental health problems. This is important, as the social stigma associated with having a mental health problem can be a disincentive to seeking information and advice.

While we can't be absolutely sure of the numbers of people with mental health problems using the Internet, we can make some inferences from what we do know.

In an average year, 1 in 4 people will experience a mental health problem

This means that, in theory at least, 1 in 4 Internet users will have a mental health problem. In practice the numbers may be less than this since many people with mental health problems are likely to find it more difficult to access the Internet in the first place - for example if they are in hospital or homeless.

Usage of the Internet by the general population continues to grow

Consumer watchdog Which? released the results of its latest annual Internet survey in July 2002. This suggests that 19 million people in the UK are online. On average, they use the Web for seven hours each week- an hour longer than last year. And almost one in ten people spends twenty hours using the Internet each week. (36)

People use the Internet to find health-related information

A study by the UK-based company Data Monitor quizzed 4,531 adults across France, Germany, Italy, Spain, the UK and the US. They found that websites have become just as important as some offline sources of health information. For example, fifty-seven percent of those who looked for health information in the past 12 months consulted Internet sources. (37)

Traffic analysis from mental health websites and forums

Most site owners and forum facilitators are able to log the number of people using their services. It is reasonable to assume that perhaps as many as 1 in 4 of those people may have a mental health problem, especially if that service is aimed at people with mental health problems.

We know from the research carried out by Paul Baker (38) that UK agencies such as Mind receive hundreds of thousands of site visits annually. Whilst these are quite modest figures compared to sites like the BBC (39), the agencies themselves said they were impressed at the reach this medium had given them, something that would have been quite impossible without the Internet.

Based on all of the information above, it seems reasonable to conclude that millions of people with mental health problems are using the internet.

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Using the internet

People with mental health problems are using the Internet in a wide variety of ways.

Looking for information

A number of studies have shown that people are increasingly looking for health-related information on the Internet - The Guardian Newspaper (40) and Health on the Net Foundation (41).

People with mental health problems - and their family and friends - will often look for information about problems, their symptoms and forms of treatment. They may also want to know about their rights, and the services and agencies which can help them.

Whilst it was always possible to get this information from books, leaflets and magazines, or by telephone or in person, there is something about the accessibility, immediacy and diversity of the information on the Internet which has opened up a whole range of new possibilities - and, it has to be said, risks.

It is also the case that some people are reluctant to approach service providers without checking them out first. In part this reluctance may be prompted by the uncertainty and fear about what might happen to them if they seek assistance from a service which has the power to detain, monitor and treat them, sometimes against their will.

Publishing their own information

People with mental health problems are increasingly using the Internet to publish their own information for their own purposes. For example, some forums and sites now contain:

• Personal accounts of living with mental distress. In some cases, this takes the form of a narrative, a diary, poetry or artwork - such as the examples on the 1^st Person site (42).
• Ideas and strategies for living with mental health problems, including the use of alternative or complementary therapies - such as those found on the Tidal Model site (43).
• User perspectives on mental health policies and practices, including guides to patients rights - such as those on the MadNation site. (44)
• Assessments and criticisms of policy makers and service providers - such as those on the Critical Psychiatry Network site. (45)
• Calls to action, including campaigning for political change - such as those on the Mental Health Alliance site. (46)

For some individuals, publishing information on the Internet is a form of therapy, allowing them to put their thoughts and feelings online and enabling them to gain some form of validation from the knowledge that others will read what they have written. For others, it is a way of helping other people in the same situation, sharing hard-earned knowledge and experience.

For some people, publishing information online is a political act, enabling them to refute or counter information published elsewhere, for example in the tabloid press. This allows them to challenge inaccurate stereotyping and show that people with mental health problems are ‘people’ first. Sharing information online can also be used to mobilise other people into taking action for specific causes e.g. The No force Campaign (47).

As we can see, it is no longer the case that people with mental health problems have to rely solely on information provided by their clinicians or other health care professionals. This process of information democratisation has been an increasingly important feature in the relationship between service users and professionals over the last forty years. The Internet is speeding up this process.

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Problems using the internet

The digital divide

The Internet then, can be considered a great equaliser, a tool for the empowerment of people with mental health problems and a potential means of breaking down the stigma of mental illness in the wider community. Having said that, it would be wrong to say that is a problem-free innovation. Various studies have shown that there is a 'digital divide' between those who are using the Internet and those who are not or who are struggling to use it. For example see the digital divide debate on the Community Programmes site (48) and More than Just Access: Fitting Literacy and Content into the Digital by Andy Carvin (49).

Problems facing people with mental health problems who want to use the Internet include:

• Some people don't have access to the Internet or have very limited access. For example, the disproportionate number of people with mental health problems in hospitals, prisons, on the streets, in low income households or with additional disabilities
• The Internet - and computers in general - can seem very daunting, especially to people who are easily intimidated or confused. These prospective users may be worried about the costs of logging on, the danger of crashing the entire Internet or of just looking stupid. And they may struggle to understand the concepts and the jargon.
• Some people with mental health problems, especially those who feel they have been abused by the 'system', are reluctant to visit sites or use forums where their identity is recorded. This includes sites which use cookies or forums which require members to log in with personal information. (A separate and important confidentiality issue concerns the employers’ rights to monitor staff Internet usage. What is the position where staff may use Internet mental health services to assist with mental health problems that the employer was unaware of?)
• The sheer volume of information about mental health issues on the Internet can be a problem in its own right. For example, we undertook a search for websites on Google in October 2002 using the search term 'stress'. (14) This produced 8,680,000 results i.e. pages. How do you even begin to decide which of these pages to look at? And how do you judge which are likely to be the most relevant and useful to you?
• The design of some websites and forums is very poor, making it really difficult to find what you want. Many sites pay little heed to accessibility, with poor layout and legibility. This is possibly because the site builders are unaware of accessibility standards, such as those published by W3C (The World Wide Web Consortium) (50).
• The format in which the information is presented on the website or forum may appeal to some people but not to others. For example, some people prefer to look at pictures, listen to audio clips or even read narratives, rather than wade through lengthy, academic text.
• The quality of the information provided on some websites and forums is very poor. For example, the information may be out of date, inaccurate or unreliable. Or the text may be full of jargon or written in language which is indecipherable without a code-book.
• The information provided on one website or forum may flatly contradict the information provided on another. Take for example Electro-convulsive therapy (ECT), a controversial treatment, which has both supporters and detractors. We have discovered 18 websites specifically dealing with ECT. On the pro side of the fence is The Association for Convulsive Therapy (51), an international organisation dedicated to promoting the safe, ethical, and effective use of electro-convulsive therapy. On the anti side of the fence is Ban Shock (52), which unsurprisingly given the name, is in favour of banning any form of ‘shock’ treatment. In the middle ground is ECT On-line (53), which provides information both for and against the treatment. Which of these sites you choose to believe depends as much on your own beliefs and values as it does on the scientific credibility of the information.

• We also have to acknowledge that some people are simply not interested in using the Internet.

Mental health problems caused by the internet

We need to be aware that the Internet may pose its own risks and threats to mental health:

• computer rage, when users become frustrated with their computers or the Internet as a whole. (54)
• Internet addiction which, according to some commentators, can lead to people becoming dependent on the Internet - to the detriment of everything else.(55)
• the fragmentation of society, caused by people losing key communication skills, so that they longer interact with other people in positive ways. We need to guard against this tendency, even though current evidence about whether this is happening is mixed. Many people report that the Internet actually brings people together. (56)

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What does the future hold?

It is always difficult to predict the future with any degree of certainty. What does seem certain is that the Internet is here to stay, that it will become increasingly important, and that we need to learn to use it so that it benefits people with mental health problems.

Changes which may affect the way in which people with mental health problems use the Internet in the future include:

• Continued technological developments. This includes the roll out of broadband access and greater uptake of WAP, WebTV and other cutting-edge media. This in turn is likely to lead to a greater - and a more sophisticated - use of multi-media including audio, video and animation. So we may see more sites like @ease (31). Or we could see virtual, avatar-based therapists, programmed to respond to an individual's personal needs.

• Continued growth in the numbers of people with mental health problems going online. In part this may be fuelled by lower costs and by the increasing number of access points, such as Cyber Cafes. It may also be fuelled by government initiatives, such as the recently launched Cybrarian project (57), which aims to get the bulk of the UK population online by 2005.

• Increasing use of the Internet as marketing tool by pharmacy companies to advertise their medication and indirectly influence prescribing by clinicians (58).

• Greater number of people with mental health problems publishing their own information on the Net, as opposed to just reading information provided by policy makers or service providers. This may include a greater use of 'blogs', web-based diaries in which people record their thoughts and feelings on a continuous basis.

• Continued growth in the number and diversity of websites and forums. For example, we may see more forums geared to the needs of very small niche groups or discussing very specific mental health issues.

• Greater interaction with website and forum users. For example, we may see
  • More questionnaires, games and puzzles based on mental health issues
  • More do-it-yourself diagnostic and therapeutic tools, such as computerised Cognitive Behavioural Therapy
  • More email newsletters and viral email campaigns, including requests to take part in political action.
  • More on-line discussions and conferences. On line conferencing facilities will enable users to ‘attend’ virtually, with considerable savings in travel and accommodation costs. Some of these conferences will be held in parallel with 'actual' conferences.
  • E-broadcasting - via radio or TV - of mental health issues. This may either be streamed for live programming or archived to enable ongoing access
  • On line consultancy and consultation. Scheduled phone, email or web-cam consultation with experts from different mental health fields. This could include online therapy sessions with your therapist
  • Growth in the number and range of e-communities based around mental health issues.
  • A more critical approach towards the information provided by policy makers, service providers and traditional media, such as the tabloid press.

• The increasing importance of portals, whether generic health sites like NHS Direct (22) or mental health-specific sites like Connects (8). These portals will not only list other websites and forums. They may also provide usability ratings and awards, in part determined by visitors to the sites listed.

• More partnership building between mental health sites and forums and other agencies. For example, NHS Direct Online (59) has a partnership programme, which aims to work with major health sites in order to improve the quality of information provided on both.

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Implications for website and forum managers

If you run a mental health forum or website, or you are planning to set one up, you may like to think about some of the following issues.

• Why do you want to run a website or forum? If it's not actually adding anything new or different, should you bother? There are plenty of forums and sites out there already and you may just be adding to the confusion. However, if you feel you have something worthwhile to say then go-ahead.

• Set minimum standards for the content, the design and the performance of your online service. For example, ensure that your site or forum is kept accurate and up to date, aesthetically pleasing, and accessible. And make it clear where you got your information from and whether you are trying to promote a particular viewpoint. If you don’t bother with standards or you claim to be objective when you aren't, people may get frustrated and simply go elsewhere.

• Make use of developing technology where it is appropriate. For example, you may want to make your site more interactive, so as to provide a more useful and enjoyable experience for your users. But don't use spy technology, such as cookies or registrations, unless it's really necessary. Where you do use it, make it clear why you are using it. And make sure your site or forum is secure, so that users can be confident their details can only be seen by people who they want to see them.

• Promote your forum or site. If you don’t do this effectively, your service will be drowned out by the millions of others out there. You may find it useful to
  • set up reciprocal links to other mental health sites and forums
  • submit details to the generic search engines like Google (14) and to specialist mental health portals like Connects. (8)
  • Put details of your site or forum on your printed materials

• Involve people with mental health problems in the development of your forum or website - or encourage them to set up their own service. Not only does this ensure that your own service will be more representative, it may also assist your contributors to develop new skills, skills they can transfer to the employment market or the wider community.

• If you run any kind of establishment, such as a drop in centre, a home or a hospital, you might like to provide Internet terminals somewhere in the building. Bear in mind you may also need to provide hands on training and support, especially for people who have never used computers before.

• By providing access to the Internet, you could enable service users to overcome the isolation that many of them face. You could enable them to investigate new interests and hobbies and to develop new friendships online. The Internet could be part of a process of opening up their lives again.

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Conclusion

Most people seem to think that, on the whole, the Internet is a positive development for people with mental health problems - as well as their family and friends, carers, service providers and policy makers.

There are thousands of websites and forums with information on mental health issues. And there are millions of people with mental health problems using the Internet to look for information, to share their thoughts and feelings and to bring about change. As a result, the Internet is becoming more democratic. It is also beginning to bridge the gap between people who are frequently excluded or marginalised from society and the rest of society. The Internet could lead to a lessening of stigma faced by people experiencing mental health problems and more openness in society about the causes and consequences of mental distress.

That is not to say that there aren’t some significant problems, which prevent people with mental health problems from using the Internet. Andwe must not forget those people who are unlikely to have any meaningful access to the Internet for the foreseeable future or who are simply not interested.

We would also wish to stress that, although the Internet provides a valuable additional source of information and advice, it should not be regarded as a replacement for face to face services. But there are some exciting possibilities ahead. It is likely that the Internet is going to become even more valuable to people with mental health problems.

If you run a website or a forum you can play a part in the development of the Internet. You can help to ensure that it is inclusive and that it helps to promote positive mental health. So let's embrace it!

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References

1.  The Mental Health Foundation site at www.mentalhealth.org.uk
2.  The Foundation for People with Learning Disabilities site at www.learningdisabilities.org.uk
3.  The Mental Health Trainers Network site at www.mhtn.org
4.  The Mental Health in Later Life site at www.mhilli.org.
5.  The Choice Forum at www.choiceforum.org
6.  The 1 in 4 Forum at www.1in4-forum.org
7.  The Us as Experts Forum at www.usasexperts.org
8.  Connects: The mental health and learning disabilities portal at www.connects.org.uk
9.  Mental Help Net at http://mentalhelp.net
10.  Internet Mental Health at www.mentalhealth.com
11.  Schizophrenia.com
12.  Yahoo mail at www.yahoo.com
13.  msn.hotmail at www.msn.com
14.  Google Groups at www.google.com
15.  Open Directory (DMOZ) at http://dmoz.org
16.  Department of Health, Mental Health website
17.  National Institute for Mental Health (England) at www.nimhe.org.uk
18.  Royal College of Psychiatry at www.rcpsych.ac.uk/info/index.htm
19.  Mind: The Mental Health Charity at www.mind.org.uk
20.  The Sainsbury Centre for Mental Health at www.scmh.org.uk  
21.  The Scottish Association of Mental Health at www.samh.org.uk
22.  National Health Service (NHS Direct) at www.nhsdirect.nhs.uk
23.  Net Doctor at www.netdoctor.co.uk
24.  N-courage at www.n-courage.net
25.  The Official Mad Cow Disease Home Page at www.mad-cow.org
26.  Alternative Mental Health at www.alternativementalhealth.com
27.  The Hyperguide to the Mental Health Act site at www.hyperguide.co.uk/mha
28.  Hearing Voices Network
29.  National Self Harm Network site at www.helen.ukpet.com
30.  The UK Survivors Network
31.  @ease
32.  Rethink at www.nsf.org.uk
33.  Sainsbury Centre for Mental Health at www.scmh.org.uk
34.  STAND at www.depression.org.uk
35.  Community Care Journal Online at www.community-care.co.uk
36.  Which Online at www.which.co.uk
37.  Data Monitor at www.datamonitor.com
38.  Mental Health on the Internet, Paul Baker, Open Mind Magazine (National Association for Mental Health), May/June 2001
39.  BBC (British Broadcasting Corporation) at http://news.bbc.co.uk
40.  Health websites gaining popularity, 16th September 2002, The Guardian Newspaper, UK
41.  Health on the Net Foundation at www.hon.ch
42.  Poetry/art sites: see the 1^st Person site at www.1stpm.org
43.  Strategies for living: see the Tidal Model site at www.tidal-model.co.uk
44.  User perspectives
45.  Assessments and criticisms at See the Critical Psychiatry Network site: www.critpsynet.freeuk.com
46.  Mental Health Campaigning sites: see Mental Health Alliance at www.mind.org.uk/take_action/mha.asp
47.  No force Campaign
48.  The digital divide debate on the Community Programmes site
49.  More than Just Access: Fitting Literacy and Content Into the Digital
    by Andy Carvin, Benton Foundation at www.DigitalDivideNetwork.org
50.  W3C at www.w3.org
51.  Association for Convulsive Therapy at www.act-ect.org/act/index.php
52.  Ban Shock at www.banshock.org
53.  ECT On-line at www.priory.com/psych/ectol2.htm
54.  Costly computer rage, on the BBC site at http://news.bbc.co.uk/1/hi/business/the_economy/353563.stm
55.  Internet Addiction Guide at http://psychcentral.com/netaddiction/
56.  The Pew Internet and American Life Project, as reported on CNN at www.cnn.com/2000/US/05/10/internet.study/
57.  Cybrarian project
58.  DataMonitor at www.datamonitor.com
59.  NHSDO Partnership Programme

 

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Written in 2002