Access to health information: users
Patients are becoming increasing interested in participating in clinical decisions and taking responsibility for their own health (See section 4: consumerism and community participation). Making health information available to individuals has many potential benefits:
- It respects the principle of autonomy (see Four Principle Framework in Section 2: priorities and rationing) by helping people make informed decisions about their own health, including the availability of alternatives to medical care
- Makes services more accountable
- Promotion of self-care and improvement of lay knowledge (see concepts of health, wellbeing and illness, and the aetiology of illness, section 4: Lay Health Beliefs and Illness Behaviour)
- Promotion of healthy behaviour
- Increased advice and emotional support from fellow citizens
- Increased knowledge may lead to more appropriate usage of health services, which in turn improves health status and reduces costs
Health information, of variable quality, comes from a variety of sources including health professionals, media, family, social networks, religious leaders, educators, and increasingly the internet (see Box 1). The internet is commonly used for researching health information. In settings where internet access is still not universal one could argue that individuals with no internet would stand to benefit the most from online resources and therefore the internet could widen health inequalities. Even in areas such as the UK where the internet is ubiquitous, those who are computer illiterate are at a disadvantage; in 2013 the NHS Commissioning Board set up digital hubs across the UK to support members of the public to access the internet and reduce inequalities in access to information.
Box 1: Access to health information: the internet
The internet has revolutionised the way in which we access health information, whether it be through personal accounts of illnesses and online patient discussion groups or peer reviewed journal articles and clinical decision support tools (Purcell et al, 2002).
Online resources such as NHS Choices have greatly improved public understanding of health issues and can reduce the burden on health systems by helping individuals decide whether it is appropriate to seek medical attention. Health professionals are dealing with increasingly ‘expert’ patients but are themselves able to access specialist information more quickly using the internet.
By empowering patients with knowledge, the internet is reshaping the relationship between doctor and patient: increasingly patients accept responsibility for their health and view doctors as partners in, rather than providers of their health care. (Gray, 2002)
Given the variation in the quality of online information there is potential for the internet to be a source of misinformation, with dangerous consequences. Although there are occasional reports of individuals coming to harm as a result of online misinformation, there is however no evidence to suggest that the internet has more negative effects than other public sources of health information. (Powell, 2003)
Social media sites, whilst an extremely useful platform for information sharing among patient communities, can also encourage the spread of unverified rumours. The volume of ‘user-generated’ information has resulted in polarised views evolving among some online communities which can be difficult to counteract. (Del Vicario et al, 2016) For example, a single study published in 1998 led to a cascade of misinformation regarding the safety of the MMR vaccine. Although the study has since been discredited, claims that the MMR vaccine causes autism continue to be echoed online and have led to many parents choosing not to vaccinate their children. The fall in rates of vaccine coverage has led to a resurgence of measles outbreaks in many Western countries.
Access to health information: health professionals
The World Health Organisation (WHO) has committed to achieving universal health coverage by the year 2030 (see 2015 Sustainable Development Goals in text box 2). In developing countries, lack of access to information remains a major barrier to high quality knowledge-based care. Godlee et al (2004) note that strategies for improving access to information include:
- Funding for research in to the barriers to use of, or access to, information
- Evaluation and replication of successful initiatives
- Support for interdisciplinary networks
- Information cycles and communities of practice
- The formation of national policies on health information
The UN Educational, Scientific and Cultural Organisation (UNESCO) is committed to increasing access to information and technology and has developed a Global Open Access Portal with links to organisations providing access to and promoting the use of research and knowledge worldwide. UNESCO also runs an Open Solutions program to support sharing of educational materials, scientific information and open source software.
Box 2: Information access in the Sustainable Development Goals (SDGs)
Global advances in information technology (IT) have led to novel approaches to improving healthcare through information and education. Online seminars have been established to provide specialist HIV training to physicians in sub-Saharan Africa - these webinars are popular among physicians but their success depends upon robust IT systems and adequate levels of computer literacy. (Reid, 2012)
Access to healthcare records
The UK Department of Health has invested heavily in IT systems, aiming for a single centrally-located system of electronic patient records to provide better access for both health professionals and patients themselves. Since April 2015, patients registered with a GP in England have been able to view their own electronic health record. ‘Care Summary Records’ are also accessible to healthcare professionals across the healthcare system in order that they are aware of important patient details such as medication history and allergies.
Should a patient wish to access information about themselves that is not included in the electronic care record they may formally request the information under the Data Protection Act (1998). Health records belonging to a deceased person may be requested under the Access to Health Records Act (1990). (see NHS Choices website: your health and care records records)
Access to health service information
In the UK, the Freedom of Information Act and equivalent Act in Scotland state that all public authorities must provide information upon request by a member of the public. The individual may have to pay an administration fee, but the request must be granted within 20 working days.
Increasingly, information about health service performance is made publicly available by health watchdogs: national bodies such as the Care Quality Commission (CQC), Monitor and Health Watch regularly publish reports on availability and quality of care, as well as patient experiences. (NHS Choices website: health watchdogs and authorities)
- Aronson B (2004). Improving Online Access to Medical Information for Low-Income Countries N Engl J Med ; 350:966-968Godlee F, Pakenham-Walsh N, Ncayiyana D, Cohen B, Packer A. (2004). Can we achieve health information for all by 2015?. Lancet, 364 (9430): 295-300.
- Maxfield A, Patrick K, Deering MJ, Ratzan S, Gustafson D. (1998). Access to health information and support: a public highway or a private road?. JAMA, 280(15):1371-5.
- Muir Gray JA, Rutter H. The Resourceful Patient. Oxford: eRosetta Press, Alden Group; 2002.Eng
- Powell JA, Darvell M, Gray JAM (2003). The doctor, the patient and the world-wide web: how the internet is changing healthcare. J R Soc Med 96(2): 74–76.
- Purcell GP, Wilson P, Delamothe T. (2002) The quality of health information on the internet BMJ 324:557-558.
- Reid MJA, Flam R, Tsiouris F. (2012) New Models for Medical Education: Web-Based Conferencing to Support HIV Training in Sub-Saharan Africa. Telemedicine and e-Health 18, 565-569.
- NHS Choices website: http://www.nhs.uk/pages/home.aspx
- UNESCO Global Open Access Portal http://www.unesco.org/new/en/communication-and-information/portals-and-platforms/goap/key-organisations/
- UNESCO Open Solutions http://en.unesco.org/themes/open-solutions
© Rebecca Steinbach 2009, Rachel Kwiatkowska 2016