It’s surprising how much you can accomplish if you do not care who gets the credit.
Abraham Lincoln
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Contents Page
What we are about 1
From Steering Group minutes 3
The Cochrane Library 3
Consumer summaries 4
News from Cochrane groups 4
Governance 5
XIII Cochrane Colloquium 6
Email discussions 9
What we are about
The aim of this newsletter is to inform members and to promote discussion. It is prepared and sent using a not-too-flash computer and an internet connection that you have to dial in to. The editor apologises, therefore, if downloading the newsletter causes you problems. Please let us know if this is the situation: email .
A vigilant application of reason in medicine The medical journalist Ray Moynihan* states that what is needed is a “vigilant application of reason in medicine”, a reversal of “interests, reputations and incomes ahead of the welfare of patients”. A sometimes ‘heroic’ urge to treat, to ‘do something’ for the patient, so that both patient and doctor are ‘satisfied’, is generally seen as better than ‘doing nothing’. Yet often in controlled clinical trials as many as one third of participants taking the inactive placebo improve, which is a similar magnitude of effect as some drugs and treatments, including antidepressant drugs.
The traditional model of health care was that people went to the doctor, listened to the doctor and followed whatever the doctor had to say, or at least they tried to. The focus of the consultation was on a body part or disease (illness-centred health care) –
looking at the signs of a health problem and how a disease could be managed.
Many consumers now participate in their own care and we are encouraged by the health system to manage a health condition or disease. The argument is put forward strongly that people with chronic disease are better to be proactively informed and effective managers of their health. Despite this, a large power differential still exists between doctors and their patients, for GPs and especially for specialists, with added perceived or real pressures of limited time (and costs).
The physician’s viewpoint is still largely privileged and carries more weight. The patient’s role is also largely defined for them as the norm - the expectations of each other are largely defined.
Tension arises because of differences between what the patient feels and says, and what the doctor wants to hear. Yet, the patient is the expert in their illness experience and is asked to report their symptoms, which are subjective. They are likely to speak in emotionally charged language. The doctor is the expert in the disease and as such interprets the symptoms through objective tests to define observable or measurable results and signs of the disease, which can be followed over time.
For this reason, part of the relationship building involves differentiating between disease-specific information (physiological processes of disease that affect functions of daily living, medications and treatments) and illness-specific information (lifestyle changes, accommodations and information on everyday coping) information. Often there is little or no time for discussing longer-term effects of disease.
Communication themes include: information seeking; decision making and implementation; how to interact with the wider healthcare system; coping and making changes in lifestyle.
Working collaboratively requires good communication skills such as effective listening, clarifying expectations and understanding each party's expertise. A patient needs to ask relevant questions about their health, calling for knowledge and education, especially about disease process, possible benefits and harms of no treatment and the interventions and treatments available.
Many patients are dissatisfied with the information that health care providers give them. Consumers and patients who choose to be well informed and involved in their health care really need to convince their doctors of that. Patient and physician need to ‘accommodate’ each other – to meet each other’s needs.
It is important to keep to the forefront the links between what we know and what we do to improve the health of individuals and populations - using evidence-based health care - and placing healthcare research into the context of the ‘patient’.
People have been talking about patient-centred care as early as the mid 1950s, but what do we mean by this?
Patients and their families and their carers integrated as part of the care team, relying on activated patients with the skills, knowledge and motivation to participate as effective team members.
A philosophy of care that encourages shared: control of the consultation; decisions about interventions or management of the health problems; and a focus in the consultation on the patient as a whole person who has individual preferences that are placed within social context.
Issues in the spotlight are: understanding the whole person; finding common ground regarding management; incorporating prevention and health promotion; enhancing the doctor-patient relationship; and 'being realistic' about personal limitations and issues such as the availability of time and resources.
A Cochrane systematic review# of 17 studies assesses the effects of interventions for healthcare providers that aim to promote patient-centred approaches in clinical consultations.
Some people regarded patient-centred care as desirable in its own right while others saw it as a means to particular (and varied) ends. Studies in which improving the patient centredness of care was the primary goal tended to focus on communication skills or interpersonal skills.
Some of these studies also explicitly recognised that such skills could be important in promoting patient participation; patient satisfaction; improving health outcomes etc.
Some studies/interventions used recognised improvement of communication skills as a means of improving patient participation or partnership in healthcare discussions and treatment decisions.
Some researchers recognised the improvement of communication skills as a means to improving particular health care behaviours or outcomes.
Information for consumers and patients is best presented in small accessible chunks that allow users to 'drill down' to reach the level of information desired. It needs to be up to date, relevant and unbiased; and also available for: visiting and revisiting (information needs tend to change as patients progress through their illness journey), a reminder, or to share information with friends, family or carers. Self-help organisations were set up in many countries across the developed world to provide peer support, often with peer-led groups that promoted self-care and helped with social isolation, periods of depression and feeling emotionally charged. For some of these groups the function has changed more to providing services and supporting research. We are now in an era of online support systems and communities. Some of the difficulties with providing information to patients/consumers about their health care are being addressed using electronic packages, Interactive Health Communication Applications (IHCAs)##. These incorporate health information with elements of social support, decision support (with risk assessment), and behaviour change support. They aim to promote self care and to rationalise the use of healthcare systems, though well-informed consumers may recognise the value of specific treatments, thus increasing uptake of interventions and costs (especially with the new and expensive treatments in our technological age). The intent is that enhanced self-efficacy with motivation and knowledge enables users of healthcare services to make informed decisions, change their health behaviours, and improve health outcomes.
*Selling Sickness: How the World's Biggest Pharmaceutical Companies Are Turning Us All into Patients by Ray Moynihan and Alan Cassels. Allen & Unwin 2005.
#Lewin SA, Skea ZC, Entwistle V, Zwarenstein M, Dick J. Interventions for providers to promote a patient-centred approach in clinical consultations. The Cochrane Database of Systematic Reviews 2001, Issue 4. Art. No.: CD003267. DOI: 10.1002/14651858.CD003267
##Murray E, Burns J, See Tai S, Lai R, Nazareth I. Interactive Health Communication Applications for people with chronic disease. The Cochrane Database of Systematic Reviews 2005, Issue 4.
From a recent talk by Janet Wale (Joanna Briggs Convention, 28 November in Adelaide Australia)
From the Cochrane Steering Group
Access to The Cochrane Library for contributing Cochrane consumers
At the recent Steering Group meeting (Melbourne, October 2005) it was decided that there was broad acceptance for the proposal put forward by Carol Sakala (US) and Liz Whamond (Canada) for contributing Cochrane consumers to have complimentary access to The Cochrane Library be accepted. The criteria are to be worded by the Chair of the Steering Group, Mark Davies. The number of complimentary subscriptions is limited to 200, and it would be up to the Consumer Network to decide to whom this complimentary access should be provided. Consumers in countries with national provision would be excluded from this arrangement.
Ombudsman
Acknowledgement was given for Gill Gyte’s contribution as Ombudsman for the past five years, Kathie Clark, former member of the Steering Group and former Co-Director of the Canadian Cochrane Network and Centre, will take over from Gill as Ombudsman, sharing the responsibilities of this role with Peter Langhorne.
Cochrane reviews to have an ISI impact factor
Reviews in the Cochrane Database of Systematic Reviews will be in the Science Citation Index from January 2005, so that an impact factor will be calculated over 2007 and available in 2008. The impact factor is a tool for ranking, evaluating, and comparing journals. It is a measure of the frequency with which the “average article” in a journal has been cited in a particular year or period. It is generated from the citation reports in the Science Citation Index.
Review of the Steering Group
Alessandro Liberati, Director of the Italian Cochrane Centre, is to chair a panel which will conduct the review, which commenced in November. A final report is due by the end of July 2006.
CCNet website
At the recent CCNet face-to-face meeting in Melbourne (October 2005) it was suggested that the consumer webpages (www.cochrane.org/consumers) have a link to review summaries and abstracts (www.cochrane.org/reviews). This is yet to be actioned.
The Cochrane Library
NZ is now added to the list of countries that have national access, announced during the Colloquium in Melbourne. Consumers there can visit The Cochrane Library on Wiley InterScience at www.thecochranelibrary.com for Issue 4, 2005.
Cochrane reviews are also available for use on mobile devices through the efforts of the publishers Wiley & Sons.
http://www.skyscape.com/EStore/ProductDetail_Cochrane.aspx?WT.mc_id=88874
Cochrane reviews in the news
The measles, mumps, rubella (MMR) vaccination review (V Demicheli and T Jefferson: Vaccines for measles, mumps and rubella in children) is receiving a lot of media attention and has become the most accessed Cochrane review. In the UK:
Metro London Weds 19 Oct, 2005
“The latest research involved a review of 31 studies from around the world and was carried out by the independent Cochrane Review, a non-profit making healthcare review body. It warned that decisions about MMR should be made on carefully collected evidence and not just on ‘biased opinion, speculation or suspicion’.”
Daily Mail Thurs 20 Oct, 2005
MMR jab link with autism is dismissed. Researchers say fear over triple vaccine is based on flawed evidence. “The controversial MMR jab is not linked to disorders such as autism, experts declared yesterday.
Researchers analysed 31 studies from around the world and concluded there was no credible evidence behind the claims that the measles, mumps and rubella vaccine can cause harm.”
The Guardian, Thurs 20 Oct, 2005
At last – the end of the MMR myth. Dr Simon Aitkins on why it’s safe to give jabs
“Its official, the MMR jab is safe…..A report published yesterday by the Cochrane Library (the most authoritative source of evidence-based medicine) has shot holes through the flimsy evidence linking the controversial vaccine with autism and provided vindication for all of us doctors who stuck by it, ….
Hopefully the Cochrane review will begin to turn things around and restore public confidence. It has the reassuring clout of including the current evidence that is available on the effectiveness and safety of the vaccine from around the world. And it has been produced independently, so that it avoids claims of bias. So, unlike the concerns expressed in 1998, Cochrane’s conclusion – that there is no credible evidence for a link between MMR and autism – can be trusted as sound.
….and right to remind anxious parents that with half a million deaths worldwide from measles alone every year, they can’t afford to risk not vaccinating their children.
Other reviews published in Issue 4 receiving extensive international coverage include: Physical training for asthma; Acyclovir for treating varicella in otherwise healthy children; Bed rest with or without hospitalisation for hypertension during pregnancy; and in the US Laxatives for the treatment of hemorrhoids.
Consumer summaries - work in progress
Existing reviews, funded by the Cochrane Collaboration Steering Group
The start of this project was facilitated by Mark Davies as Co-Chair of the Collaboration sending an email out to review authors (July 14, 2005). The email alerted review authors of the change in terminology from ‘synopsis’ to ‘plain language summary’ and of the role of CCNet in developing summaries for existing reviews, through review group co-ordinators. Summaries for existing reviews have been prepared for a few review groups. A model that we would like to continue is where summaries are prepared using a team of Cochrane consumers; the team peer reviews each other’s prepared summaries.
CCNet has also undertaken to create a database of review titles (The Cochrane Library Issue 3, 2005) identifying which reviews are without summaries.
We welcome more consumers who would like to try their hand at this work – please advise by emailing: . The present project is with the Neonatal Group! Some modest payment is available and will be made as a single amount at the end of the project.
CCNet provides a service to draft summaries on request by review group co-ordinators. If the review is going through the editorial stage and a Review Group coordinator wants us to draft a summary then they can contact us
The e-mail discussion list
The e-mail list serve, is a moderated e-mail discussion list that helps with communication - we would like to hear from you too! Any email to the above address goes through two very stringent virus and SPAM filters.