Equality, Equity and Policy: Public Access to Information
Patients are becoming increasing interested in participating in clinical decisions and taking responsibility for their own health (See section 4: Consumerism). 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 and 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. However, internet access is still not universal and arguably those who could benefit the most are least likely to have access, potentially increasing health inequalities. Barriers to access include: cost, geographic location, illiteracy, disability, and factors related to the capacity of people to use technologies appropriately and effectively (Eng et al., 1998).
Box 1: Misinformation and the internet
Health information on the internet ranges from personal accounts of illnesses and patient discussion groups to peer reviewedjournal articles and clinical decision support tools (Purcell et al, 2002). The internet has many benefits, as noted above, however, public health professionals have been increasingly concerned with the potential for health misinformation on the internet. While some have argued that there is no evidence that the internet harms health (Smith 2001), Kiley (2002) cites instances where unproven health recommendations found on the internet have resulted in injury or death. For example, a patient who died of kidney and liverfailure after using hydrazine sulphate as recommended by theKathy Keeton website (which has since been taken down) as an alternativetreatment for cancer. Misinformation is particularly problematic when patients replace conventional treatments with unproven alternative treatments found on the web.
Many researchers have developed tools for assessing the quality of information found on the internet (Gagliardi and Jadad 2002). However, as Purcell and colleagues (2002) note defininga single quality standard for such a disparate collection of resourcesis challenging. Furthermore, different users may have differentcriteria for quality. Patients and caregivers may want simpleexplanations and reassurance, whereas healthcare professionalsmay want data from clinicaltrials. The value of these assessment tools remains uncertain.
The WHO has made universal access to information for health professionals a prerequisite for meeting the Millennium Development Goals and achieving Health for All. Patients are more likely to lack essential information if their health
workers do not have access to up to date information. Additionally, advances in public health knowledge are so rapid that no single clinician or practitioner could possibly keep up with it all.
In developing countries, lack of access to information remains a major barrier to knowledge-based care. Godlee et al (2004) note that strategies for improving access 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
There are many successful initiatives to improve access to information in developing countries. For example, established in 1967, BIREME (http://www.bireme.org) is an initiative of the Latin American and Caribbean Centre for Health Sciences Information which seeks to improve information access. Goodlee and colleagues (2004) note that In collaboration with the Foundation for the Support of Science of São Paulo (FAPESP) and the Chilean National Council of Sciences, BIREME set up SciELO (the Scientific Electronic Library Online, (http://www.scielo.org), which was the first and is now one of the largest sources of free full-text access to health research information. BIREME also set up LILACS (http://lilacs.bvsalud.org), which indexes journals from Latin America and the Caribbean, and the Virtual Health Library (http: /www.bvsalud.org), which provides free online access to a range of evidence-based resources that support health-care decisions. Other successful initiatives include EMRO (World Health Organization Eastern Mediterranean Regional Office) Index Medicus (http://www.who.int/library) and WHOs Health InterNetwork Access to Research Initiative (HINARI) http://www.who.int/hinari.
In England, the Department of Health initiated the NHS National Programme for IT (NPfIT) in 2000, which aims to move the NHS towards a single centrally-located system of electronic patient records to provide better access to patient information to both health professionals and patients themselves. NPfIT will enable details of the key events of a persons healthcare history throughout their life to be collected, stored & retrieved and made available at all times to health professionals. The Department of Health also plans to give patients access to their own medical records online through healthspace https://www.healthspace.nhs.uk. Implementation of this ambitious project has taken longer and cost considerably more than expected. It is now due to be completed in 2014, with expenditure on the programme expected to be more than £12 billion (House of Commons Committee of Public Accounts 2007).
In the UK, the accountability for reasonableness (see Table 2 in section 2: Priorities and rationing) principles adopted by the NHS call for decisions to be based on evidence. A major threat to evidence-based policy and public access to information is publication bias. Publication bias results when researchers and editors make decisions on whether to publish study findings based on the strength or direction of the findings. Significant publication bias has been found in meta-analyses, controlled studies and randomised controlled trials (Dickerson, 1993; Sutton 2000).
- Dickersin K, Min YI. (1993). Publication bias: the problem that wont go away. Annals of New York Academy of Sciences, 703: 135-46.
- Gagliardi A, Jadad AR. (2002). Examination of instruments used to rate quality of health information on the internet: chronicle of a voyage with an unclear destination BMJ,324:569-573.
- Godlee 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.
- Eng T, 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.
- House of Commons Committee of Public Accounts (2007). Department of Health: The National Programme for IT in the NHS Twentieth Report of Session 200607. London: The Stationery Office.
- Purcell GP, Wilson P, Delamothe T. (2002) The quality of health information on the internet BMJ324:557-558.
- Kiley R. (2002). Some evidence exists that the internet does harm health BMJ, 324:238.
- Smith R. (2001). Almost no evidence exists that the internet harms health BMJ,323:651.
- Sutton A, Duval S, Tweedie R, Abrams K, Jones D. (2000). Empirical assessment of effect of publication bias on meta-analyses. BMJ, 320:1574-7.
© Rebecca Steinbach 2009