'"Don't panic" over HRT research'
Recent media reports are littered with headlines such as these. What impact are such headlines likely to have on women considering, or currently taking, hormone replacement therapy (HRT) and where will they turn for further information and advice?
A study jointly funded by the Economic and Social Research Council (ESRC) and the Medical Research Council (MRC) suggests that, without significant policy rethinking, GPs are likely to remain the most important source of information and advice to women, despite increasing access to sources of health information like the Internet.
The study investigated the processes by which women found out about HRT and its risks and benefits. In particular, the study identified the main concerns women had about risks, their main sources of information, their interpretations of what they found, and how this fed into their decision-making to take HRT or not.
Thirty-two mid-life women, all of whom had been prescribed HRT, were recruited through a GP practice or gynaecological clinic. Sixteen of these were followed up over a period of a year to assess the significance of changed health status or new research and/or media reports on their approach to information seeking regarding HRT risks. Health care professionals (GPs, obstetrics and gynaecology consultants) consulted by a sub-group of women were also interviewed, and observations of consultations between doctors and patients were also made.
The study focused on the debate concerning 'patient involvement' in the health service, now a major strand of government health policy. A key aspect of this is the extension of 'informed choice', where patients are supposed to take a more central role in decision-making about their health treatment options and other aspects of health care. New media services such as NHS Direct (telephone and online services), and the Internet more generally, are seen as supporting the emergence of new 'informed patients' who will engage in more equitable relationships with health care professionals in the process of decision-making.
The study investigated the processes by which this particular group of women became 'informed' about HRT. It has identified several key constraints on the emergence of the 'informed patient' and the practice of 'informed choice':
- Many women are still reluctant to take the responsibility implied by the notion of the informed patient/informed choice and are happy to rely on advice from their GP and other health professionals
- Those that do seek to inform themselves often find they have insufficient 'information literacy' to manage and interpret what they find – this is especially the case when trying to navigate the world wide web
- Those that successfully manage information and come to form a view about preferred treatment approaches often find their preferences dismissed or ridiculed by their doctors who encourage women to take HRT
- Many health professionals resist the development of more informed patients, either because their authority is being challenged or because they fear they won't be able to cope with the extra demands made by such patients
The study has major implications for health policy in the field of consumer health information. "Everyone may well have a 'right' to information," says Dr Fils Henwood, "but if they are reluctant to take the responsibility implied by that right, then the policy and practice of informed choice is doomed to fail."
"Most treatments incur some risks - if patients are fully informed and engaged in decision-making, as opposed to placing trust in doctors and letting them decide, then they are also culpable when things go wrong," she continues.
"This is good news for the medical profession but it may be something for which the wider public is not yet ready.
"If the government is really committed to the development of more informed patients, it has to recognise the need for more resources to be put into the development of appropriate information literacy skills, especially those associated with Internet use.
"In addition, health care professionals' education and training will need to change in ways that enable them to embrace, rather than resist, the emergence of new informed patients. This may well include the development of a less authoritative relationship with patients and a greater honesty about how government health policy and resource constraints influence the advice they give."
For further information, please contact:
Dr Flis Henwood, tel: 01273-643341 / email: f.henwood@bton.ac.uk
Or Lesley Lilley or Rachel Blackford at the ESRC: 01793-413119/413126
NOTES FOR EDITORS
1. Dr Fils Henwood is based at the Social Informatics Research Unit, University of Brighton. The research project Presenting and interpreting health risks and benefits : the role of the Internet was funded by the ESRC.
2. The ESRC Research Programme 'Innovative Health Technologies' aims to advance understanding of the current and future implications of innovative health technologies, the effects of which will be mediated by wider processes of social change. Innovative health technologies (IHTs) – such as new drugs, devices, procedures, hospital delivery systems and wider organisational and socio-technical change – present policymakers and the public with major new concerns. The promises and risks of IHTs are currently raising important social, cultural, ethical, economic and political issues which merit thorough investigation from within the social sciences. The programme approaches such technologies from the viewpoint not simply of their impact on medicine, but also of their broader implications for public health and wider social, economic and political arenas.
3. The ESRC is the UK's largest funding agency for research and postgraduate training relating to social and economic issues. It provides independent, high-quality, relevant research to business, the public sector and Government. The ESRC invests more than £76 million every year in social science and at any time is supporting some 2,000 researchers in academic institutions and research policy institutes. It also funds postgraduate training within the social sciences to nurture the researchers of tomorrow. More at http://www.esrc.ac.uk
4. REGARD is the ESRC's database of research. It provides a key source of information on ESRC social science research awards and all associated publications and products. The website can be found at http://www.regard.ac.uk.