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Advisory Report on the Patient and the Internet 

The Dutch Council for Health and Social Service (RVZ) published the advisory report The Patient and the Internet in March 2000. This report, which was commissioned by the Minister of Health, Welfare and Sport, addresses the use of the Internet by health consumers. 

The key message of the report is that measures neeed to be taken to ensure that everyone who wants access to the Internet in order to obtain and exchange health information can gain such access and promote the proper use of information. That in a sentence is the message of this advisory report.

Their recommendations include:

• The national government needs to ensure that the education system imparts the necessary skills for dealing with the information and particularly the information obtained on the Internet. In the case of children of school-age, for example, this means that dealing with health information should form part of the teaching of 'care'. In the case of care-providers this means that dealing with patients who visit their doctor armed with the information needs to form part of medical/paramedical training/further training. For the elderly the existing range of courses needs to intensified.
• The government and parties in the field must take efforts to make the elderly aware of the opportunities provided by the Internet and to reduce computer-inhibitions. Government support should be provided for organisations involved in such activities, for example the provision of Internet training for the elderly.
• Municipalities should provide their citizens with the possibility of obtaining health information on the Internet. They could do so by providing separate access to the Internet for those unable to afford such access themselves. The national government should encourage failing municipalities to do so by means of financial instruments, such as a bonus/penalty scheme.
• The national government, municipalities and health institutions should jointly ensure that people in residential care have access to the Internet. Sheltered housing facilities, homes for the elderly and nursing homes can do this by providing 'Cybercafés', where residents can use the Internet free of charge.
• Health institutions such as hospitals need to provide an Internet connection at information counters for patients and patient advisory centres, so that up-to-date electronic files can be consulted and up-to-date, customised information can be printed out for patients, while links need to be provided to patient associations. This also applies in principle to waiting rooms in outpatient clinics, where the staff can provide the patient with customised, written information drawn from the intranet/Internet.
• In so far as this is not regulated by the 'free market' itself, the state government needs to promote the competition between Internet providers and between telephone and cable companies in order to minimise the cost to the consumer/patient. There is an important task here for the OPTA and the Dutch Competition Authority.
• Care-providers and institutions must provide information of relevance to the patient on their own organisation/practice (accessibility and so on).
• In consultation with patient associations, scientific associations of care-providers need to provide information on new and existing treatments, relevant research and the risks associated with such treatment.
• A public/private partnership of government, care-providers and patient associations, organised for example through the CBO, should make guidelines and protocols for the treatment of sickness on the Internet accessible for all, i.e. also - in comprehensible language - for consumers, along the lines in the United States and Canada.
• Organisations of professional practitioners should provide information in consultation with patient associations on the quality of care. If necessary a public/private partnership of government and parties in the field should take responsibility for this. In this regard the inspection services should provide relevant information for patients on the quality of care.
• Patient associations and organisations of professional practitioners should draw up public codes of conduct for themselves in order to safeguard their independent position vis-à-vis the financiers of their websites in terms of the information made available on those sites. The observance of such codes of conduct should be one of the preconditions for inclusion as a reliable organisation in a health portal.
• It is not just important for the information to be available on the Internet. The information must be readily accessible. This will require the following.
• The national government should itself or by means of public/private partnership set-up a Dutch-language health portal where reliable information is provided, with links to the sites of organisations regarded as reliable.
• The national government should promote this health portal in the media, for example by broadcasting a TV commercial referring people to the name of the website on which information on health can be found. The government should set up an electronic care 'finder', helping people to find their way through the currently unfathomable maze of existing care facilities and services on the Internet, so that they can rapidly find out what facilities are available in the field of care, housing, employment and training and the conditions on which these can be taken up. The Government Counter 2000 project provides an initial step in this direction.
• Care-providers, patients, health insurers and industry need to co-operate in creating access to information for certain target groups. The Internet 'rheumatism village' and 'diabetes house' are examples. In order to prevent a conflict of interest, a code of conduct needs to be adopted in order to prevent undesired marketing activities.
• Encouragement of projects aimed at the presentation of relevant health/healthcare information on the Internet to specific patient groups (for example the blind and partially sighted).
• Responding to the emergence of new possibilities on the Internet, making use of moving images and sound in order to transfer information, for example members of ethnic minorities and illiterate people.
• The players concerned should all provide information so that Internet users are able to identify and use the possibilities and limitations of the Internet more effectively. They must be provided with means for assessing the reliability of information.
• The government must actively stress the importance of reliable information. One way of doing so would be to sponsor banners linked to search engines. These banners would need to point to the importance of reliable information and to provide a link to a short list of points, indicating how the information on offer should be dealt with.
• The government must ensure that reliable information currently available on other media (for a limited public) - such as the information assembled by the NIZW and provided for example on CD-ROM - is also available on the Internet.
• Professional practitioner organisations should have web consultants to whom citizens/patients can pose questions concerning health and healthcare, especially the way in which they should deal with information on the Internet. The net-doctor for 12-18-year-olds appointed by the Royal Dutch Medical Association (KNMG) is a good initiative in this regard.
• If patient associations and professional practitioner organisations consider that the certification of websites in specialist healthcare offers added value they should arrange this jointly, as a form of self-regulation; there is no task here for the government.
• Insurers should provide an e-mail advisory address from which their policy-holders can obtain advice on health promotion and on decisions as to whether or not to seek medical help, with a view to preventing consumers from seeking medical help too late or unnecessarily.
• In consultation with organisations of care-providers and patient associations the national government should create a facility where consumers can file complaints concerning the provision of healthcare information, products and services on the Internet. On the basis of this 'cyberwatch' the governments can undertake action, for example by warning consumers. (In the case of complaints about the Internet information supplied by mainstream organisations with customer complaint schemes, the complainant can of course turn primarily to that organisation.)
• The government and other players must provide information to citizens/consumers/patients concerning the risks associated with obtaining services and products on the Internet. Among other things the government can achieve this by setting up a health portal and by sponsoring banners, linked to search engines, indicating the health risks attached to (for example) the ordering of drugs abroad.
• All players must respond to the wishes of those concerned by offering facilities meeting their needs. This means for example that doctors should also be accessible via the Internet.
• In its decision to include new prescription drugs in the insured package and remove existing drugs from the package and to demand additional payment, the national government should take into consideration that such measures may encourage patients to order such drugs more cheaply and uncontrolled abroad.

Advisory Report on the Patient and the Internet