• The Cochrane Consumer Network
• Why consumers in Cochrane
• Why consumers become involved
• How consumers contribute
• What Cochrane groups say
• Personal consumer stories
• Patient Champions in the WHO Patients for Patient Safety program
• Consumers in resource poor or developing countries
• Examples of review titles for different groups
• For Cochrane review groups and fields

The Cochrane Consumer Network (CCNet)

Download a Membership Form!

The Network encourages consumers throughout the world to give their perspectives and have their say on priorities for health care and promotes healthcare user input into and acceptance of evidence-based practice.

• CCNet Vision: Enhanced accessibility and relevance of Cochrane reviews through consumer and community participation.

• CCNet Aims: To enable and support consumer participation in The Cochrane Collaboration; and continue to develop the use and usefulness of consumer participation in Cochrane groups, in particular Review Groups. 

CCNet works under the Cochrane principles of:

• Avoiding duplication of effort
• International collaboration (across high income to low income populations)

Its role is to:

• Support consumer involvement within The Cochrane Collaboration
• Linking consumers (and organisations)
• Developing training
• Mentoring
• General support
• To disseminate information from Cochrane reviews
• Increase awareness of evidence-based health care, in practice
• Keeping consumers informed (website, newsletters).

• Provide administration as a registered Cochrane entity
• Responsible reporting (Steering Group, Monitoring and Registration Group)
• Two steering group consumer representatives
• Keeping members strategically informed

• Undertake funded projects

• Provide governance for consumers within the Collaboration

A note about the term 'consumer'

We have adopted the term consumer as it is already widely in use in The Cochrane Collaboration and because it is difficult to identify any other term that is more universally acceptable. The term ‘consumer’ may not be considered appropriate among some groups of people or in some countries. It is associated with buying or choosing a health service. Other terms may be preferred, such as user or receiver of health care, patient, a member of the public, citizen, carer/caregiver, or lay person. Each of these terms have different connotations in different environments.

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Why consumers in Cochrane?

The authors of Cochrane reviews may consider a question for a review because of their own interests and experiences as a clinician or a healthcare researcher. These are not always the questions that are of most concern to healthcare consumers and their families and carers.

It is not easy for us, the public, to understand how the questions for Cochrane reviews need to be stated in order to be ‘answerable’ in research terms. You can learn more about this from our Training materials on the Resources webpage.

The purpose of consumer input during the review process is to:

• ensure that a review question is relevant to people requiring health care and who are offered an intervention by their healthcare providers;
• identify outcomes from healthcare interventions that are important for consumers – which may be different from those identified by service providers;
• improve access to reviews by ensuring that the review can be read by a wide audience, and the language is sensitive to consumers;
• weigh up the benefits of a healthcare intervention against the potential harms – from a healthcare user perspective;
• prioritise topics for new reviews. 

Consumers also contribute to dissemination of information from Cochrane reviews, handsearching journals, translation, co-authoring reviews and other activities within The Cochrane Collaboration.

The Managing Editor of the Cochrane Skin Group expressed the reasons for involving usersw of health care:

From the very beginning, consumer involvement has been a strong feature of the Skin Group. This is because the impact of skin disease is mainly on the quality of life of the individual and because much of the trial work in skin disease has been dominated by answering questions that are important to the pharmaceutical industry. Consumers help us to redress that imbalance.

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Why consumers become involved

This question was answered in a survey that was part of a Review of Consumers in Cochrane in 2009.

The most common reasons are the desire to: 

• Make information about evidence-based health care more accessible to people;
• Learn and keep up to date - either with research about a specific condition or with evidence-based health care;
• Contribute to the development of evidence-based health care.

Furthering my education in and experience with the Cochrane Collaboration provides an opportunity to share information with people in my community and beyond.

Governance and representation

The Cochrane Consumer Network (CCNet) was registered as an 'entity' within the Collaboration in October 1995, only a couple of years after the formation of the Collaboration itself.

The membership of CCNet has grown from just a handful of consumers to over 400 members from many different countries across the world.

Key roles (largely voluntary positions)

• Convenor
• Membership Administrator/Administrator
• Chair of CCNet
• Project Officers
• Geographical Centres Advisory group members

Governance is through the CCNet Geographical Centres Advisory Group, set up to:

• Provide governance of the Network by the members themselves;
• To be internationally inclusive;
• Enable liaison with Cochrane Centres.

The present Geographical Centres Advisory Group members are:

• Claudia Cattivera (Argentina); Alison Thomas (Bahrain); Raphael de Souza (Brazil); Janet Wale and Stephanie Newell (Australia); Liz Whamond and Anne Lyddiatt (Canada); Mingming Zhang (China); Nete Villebro (Denmark); Heija Balmer (Finland); Britta Lang (Germany); Mona Nasser (Iran); Sara Yaron (Israel); Silvana Simi (Italy); Jacqueline Limpens (Netherlands); Judi Strid (New Zealand); Godwin Aja (Nigeria); Vasiliy Vlassov (Russia); Kathie Godfrey (Spain); Chanpen Choprapawon (Thailand); U Hla Htay (UK); Barbara Warren and Maryann Napoli (US).

The two Cochrane Collaboration consumer Steering Group representatives are:

• Liz Whamond (Canada); and
• Mingming Zhang (China).

The annual Cochrane colloquium provides an opportunity where consumers from a variety of countries can meet. A number of meetings and workshops are organized that provide consumers with a better understanding of The Cochrane Collaboration and how we can best contribute.

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How consumers contribute

The most common roles are commenting on:

• pre-published systematic reviews of best evidence on a healthcare intervention;

• protocols – the road map as to how the review is to be done;

• the summaries of reviews in plain English, or having a role in preparing them.

Consumers are also involved in:

• Raising people’s awareness about evidence-based health care;

• Recruiting other consumers to help with the work of Cochrane;

• Disseminating information about particular Cochrane reviews.

Some consumers also co-author systematic reviews of best evidence. 

Cochrane disease-based groups ask for your assistance!

- in commenting from a healthcare user perspective on Cochrane protocols and reviews. Yet not all Review Groups involve consumers.

The Cochrane group you are interested in may be based in another country, and possibly even another continent. Most communication is by e-mail, making it cheap and fast for those with reliable access to the internet, and quite a stumbling block for those without.

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What Cochrane groups say

The aim of any medical care is to benefit patients. Ultimately, the best person to judge whether any healthcare intervention has been beneficial is the patient, and people in his or her close environment. It therefore seems reasonable that patients and consumers in general, should be more directly involved in systematic synthesis of the clinical trial results on healthcare interventions and treatments.

In the 2009 Review of Consumers in Cochrane, the most common things Cochrane Review Groups said they wanted from comments from consumers were to improve the:

• Readability and/or quality of reviews;
• Usefulness of the plain language summaries.

What are the interventions that consumers are uncertain about and that they want to know more about? What are the particular concerns; what measures of clinical outcomes or endpoints, are particularly relevant - and does the review address these?

What financial conflicts are there in the clinical trials that have been carried out?

Collaboration with consumers gives Review Groups the opportunity to explain to the general public the need for critical assessment of scientific data and of its representation in the media.

Challenges to consumer participation in the Cochrane review process

As part of the 2009 Review of Consumers in Cochrane, just over half of the Review Groups said that they were gaining benefits from involving consumers. Consumers bring different skills, knowledge or experience and make a positive difference to their Review group at least some of the time.     

• The main barrier identified by Review Groups was funding. 

One Review Group Managing Editor said: My worry is that [consumers] are brought in on one premise that you’ve had the disease, you’re a caring person with time enough to devote and you buy into the Cochrane ethic and so on, but actually when it comes down to sitting and reading a paper, there are very specific skills which they may or may not have.

Consumer comment: I think it does help to have a scientific or medical background, but it’s not as important as it used to be because you can just Google practically everything and come up with an answer.  To do what I’m doing you need to be able to write… You’ve got to be able to write in literate English. 

Feedback to consumers is not always enough: Review Groups appear to appreciate comments but I don't know to what extent the authors take the comments into account and whether they even think consumer input is meaningful. One Review Group did provide a summary including all peer review comments and the authors' reactions to the comments (which was very interesting!)

The Collaboration works mostly through the internet and some people miss personal contact, particularly when they want to follow something up.

The Review Group in the particular health care does not always promptly get back to interested consumers. This is something we are working to improve on.

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Personal consumer stories

Sylvia Beamon (UK): Identifying topics/review questions - “Speleotherapy is practically unheard of in the UK”

As a consumer suffering from asthma, Sylvia Beamon directed the Airways Group to the use of speleotherapy for asthma and other chronic obstructive airways diseases.

Speleotherapy, the use of subterranean microclimates in both natural caves and mines, has considerable widespread use in some Central and Eastern European countries where the treatment is fully accepted under their respective national health authorities, but is practically unheard of in the USA, and in the UK, where the review group is based.
The review group accepted the topic and Sylvia, an archaeologist with expertise in the study of underground space, also felt that she wanted to write the review. She joined up with two medical doctors and a physicist to do this. The review, 'Speleotherapy for asthma' is available in The Cochrane Library.

Kathie Godfrey (UK): “I’m a lucky person”

A good opportunity to give something back

I was very grateful for the prompt and efficient way my problems were dealt with by the medical profession. In 1998, I saw an advert in the Southampton local paper for volunteers to do some handsearching of medical journals relating to gynaecological cancer on behalf of the Cochrane Collaboration. Although I had no knowledge of this organisation, it seemed like a good opportunity to give something back so I volunteered my help.

No medical knowledge required

Handsearching does not require any medical knowledge, just an ability to pick out well-defined key words and phrases. It was explained to our group of volunteers that we would be searching for evidence of Clinical Trials that were suitable for inclusion on the Cochrane Collaboration Register. We were given a couple of training sessions on how to search journals for Trials or Abstracts of Trials that fulfilled the criteria for inclusion on the Register. Our lists were then checked out by the Handsearch Co-ordinator and if appropriate, submitted for inclusion.

Providing consumer input to three Cochrane groups

After nearly four years of this work, the Editor of the Gynaecological Cancer Group invited me to provide consumer comment on Protocols and Reviews of Clinical Trials for the group and I am also providing the same input for the Skin Group and recently, the Anaesthesia Group. I have attended two Colloquia, which have increased my knowledge of the Cochrane Collaboration, and I hope my usefulness within the organisation.

Teenah Handiside (New Zealand): “I maintain contact with Cochrane friends via e-mail”

Hi, I am Teenah Handiside and I live in Wellington, New Zealand with my husband John. We have two sons, and two beautiful grandchildren!  I have been actively involved in consumer health issues for over many years. I have a particular interest in women’s health issues. I enjoy contact with other consumers and with my many Cochrane friends in all parts of the world via e-mail.

I have been involved as a consumer with Cochrane for many years and have learnt lots. I have participated in several groups including the Consumer Network, and also including the Skin Group, Pregnancy and Childbirth, the Breast Cancer and the Airways Group. I have contributed in a variety of ways such as commenting and providing input to protocols and systematic reviews. I am currently a member of a Skin Group review team. I have been a member of Consumer Network working parties and participated in several training sessions. I have been fortunate to receive stipends to assist to me to attend Colloquia and to present a paper.

In New Zealand I always promote Cochrane as the first point of contact for health information.   I have assisted with training and enjoy networking with other consumers with an interest in Cochrane and evidence based health care.

Maryann Napoli (USA): “ I regard myself as a 'translator' of medical research”

People should know whether research supports their treatment.

I am the associate director of the Center for Medical Consumers in New York City (www.medicalconsumers.org). With several others, I co-founded this non-profit advocacy organization in 1976 to promote the idea that people should know whether there is any research to support the treatments their doctors recommend. In writing the Center’s monthly newsletter, I summarize the findings from newly published clinical trials and concentrate on the most common medical decisions people must make: Does this new heartburn drug offer any advantage over the older, less expensive heartburn drugs? Should I take hormone therapy for the rest of my life to prevent heart disease? Will this new cancer drug prolong my life? I regard myself as a “translator” of medical research for the general public.

'Mammography will save your life' is a one-sided message

Mammography screening has long been promoted to women in the USA with the largely one-side message: mammography will save your life. I was very interested in the work of the Nordic Cochrane Centre because the review authors did the most concentrated in-depth analysis of the world’s best mammography trials. Their conclusion not only raised questions about mammography’s lifesaving value but also identified serious associated risks. Here was my opportunity to give American women a viewpoint that they rarely heard from their doctors or the cancer organizations. I wrote a summary of this review for my newsletter that goes out in hard copy to 2,000 subscribers and 1000s more read it via Internet subscription services. Recent US clinical practice guidelines acknowledge the uncertain benefit of mammography screening of women at low risk of developing breast cancer.. Elin Strømme Nilsen (Norway): just getting started

Nelly Orifa (Kenya): "Cochrane is a source of a lot of information"

David Potter (UK): “I enjoy commenting on protocols”

A biochemist, retired in 1995 after 45 years at the laboratory bench, I had been looking for a new scientific interest. I have atopic eczema, and joined the National Eczema Society in 1996. I became aware of the Cochrane Skin Group and learned of Archie Cochrane, a Professor of Epidemiology at Cardiff, who envisaged a library containing the results, analysis and conclusions of every controlled clinical trial ever carried out. Ideally, the treatments should be randomly allocated to patient groups and neither the administering physician nor the patient should know what treatment is given. Only by such stringent controls can clinical trials be performed in a truly objective manner.

Doctors base their treatments on what they have been taught, their experience and what they have gleaned from the medical literature and from pharmaceutical companies. This information may be out of date, biased or incomplete. Doctors are able to spend only a small amount of time each week reading journals (there are currently about 100 dermatology journals).

Systematic review of a group of clinical trials abstracted from journals showed that:

• new clinical trials have been performed long after a particular treatment outcome had been clearly demonstrated;
• different endpoints were used to determine successful treatment;
• the endpoints were sometimes inappropriate; and
• often too much emphasis was placed on statistical significance, ignoring whethere there was an actual clinical benefit of the treatment.

The task of the Cochrane Skin Group is to search all dermatology journals and identify all randomised clinical trials (RCTs) and controlled clinical trials (CCTs). When all trials on a particular treatment have been identified, they are systematically reviewed and the pooled results are analysed by a special technique (meta analysis).

Anne Lyddiatt (Canada)         

Anne has a ‘day job’ as a National Trainer for a volunteer program, Patient Partners in Arthritis, which is part of the educational program for medical students and residents at 13 Canadian medical schools. The focus of the program is to provide additional training and experience in musculoskeletal examination techniques and practice but all the volunteers are patients who also offer a wealth of arthritis disease and treatment experience to share with healthcare practitioners. The sessions also offer an ideal opportunity to discuss the safety issues from both the patient and provider aspect as well as highlight the resources on evidence-based medicine available through The Cochrane Library. She also leads arthritis self-management and chronic pain management programs and speaks at public fora.

Anne is a Patient Champion for the WHO Patients for Patient Safety program and in this role currently serve on the research team of the Canadian Patient Safety group.
The Cochrane Musculoskeletal Group has its own consumer group. It is an extremely active consumer group that helps to make reviews more relevant and to create summaries of reviews. Anne is now the Cochrane Musculoskeletal Group Consumer Coordinator. In this role she facilitates the involvement of consumers and advises the Editorial Group ion involvement of consumers, patients and caregivers.

Anne, like many of the members of CCNet, comments on Cochrane protocols and systematic reviews under development; she also recruits consumers and is involved in their training.

A dedication to Ann Qualman (Canada): "My primary role is to facilitate involvement”

In the photograph Ann was discussing the Canadian Arthritis Bill of Rights with Dr. Carolyn Bennett, a Member of Parliament. [Photo credit: Mike Pinder, for 'Arthritis News']

Silvana Simi (Italy): “Medicine must be a patient-centred discipline”

Medicine must be a patient-centred discipline

Getting past the English barrier

I wanted to make as easy as possible the access to information for Italian consumers. This means mostly getting past the English language barrier. This is not so obvious to fortunate English mother tongue consumers who do not have language problems with respect to the accessibility of information. In order to do this, abstracts and synopsis of the MS-CRG reviews were translated into Italian and published in the Newsletters of the Italian Association of MS (AISM).

Disseminating the results of systematic reviews

We have developed links among other MS National Societies in order to improve the dissemination of the results of systematic reviews to new consumers in Europe.

Maxine Whitton (UK), “A growing desire to do a review”

No need to be a researcher or a scientist to co-author a review

CCNet's Maxine Whitton is the lead author of the attached Cochrane review entitled, "Interventions for vitiligo." Maxine, who lives in London, has worked for years with the Cochrane Skin Group. Her personal experience with this skin condition led her to ask the right questions about the evidence supporting the multiple treatments available and ultimately to the hard work of doing this review.  The review has now been updated.

I had for a long time been aware of the Cochrane Collaboration through my job as an academic librarian. But it was only when I heard Hywel Williams speak at a dermatology nurse conference that I realised I could be part of it. His enthusiasm inspired me to want to contribute to the work of the Collaboration. I was surprised to learn that I did not need to be a researcher or a scientist. Soon afterwards I attended a seminar organised by the Skin Care Campaign, an umbrella group of skin charities which was then a project of the National Eczema Society. There I met the members of the Skin Group and heard about all the ways I could become involved.

Started by handsearching

I started by handsearching one dermatology journal over 20 years. I managed to rope in two other members of the Vitiligo Society of which I was the Chairman, Chris Barrett and Eugene D'Cruz. Together we made quite a jolly team sharing the searching and photocopying. We usually met at St Thomas' Hospital in London in the Calnan library where we had access to dermatology journals. I liased with Finola, the Trials Search Co-ordinator, and organised the group.

Growing desire to do a review

I was also asked to translate two articles from Spanish for a group doing an eczema review and commented on both a protocol and a review. I enjoyed all of these tasks but began to get bored with handsearching. I had a growing desire to do a vitiligo review. This disease is very under-researched and poorly understood. There is no licensed treatment for it, at least not in the UK. What better way to highlight the need for good research and encourage the search for more effective treatment? Training on how to write a protocol was also useful and we felt a real sense of achievement once the protocol was written and published. We now had a completed review that was used for the British Association of Dermatologists guidelines for the management of vitiligo.

Mingming Zhang (China): “Translation is an important part of my work”

I am the consumer coordinator at the Chinese Cochrane Centre. I have an English and education background and have worked as a University English teacher for over ten years. I was first introduced to The Cochrane Collaboration in 1997 but wondered how I could contribute, as I have no medical background. In 1999 I had the chance to visit the Australasian Centre and to talk with Hilda Bastian at the Consumer Network who introduced me to the term 'consumer' and who supported my involvement in consumer work. I have received stipends to attend Cochrane Colloquia, where I have continued to share my experiences and learn more about consumer issues. Now i am one of two consumer presentatives on the Cochrane Collaboration Steering Group.

An important part of my work is to translate the abstracts of reviews, and other Cochrane material into Chinese/Mandarin. The translated material is made accessible to Chinese consumers through our Consumer Newsletter, which I take with me to patient clubs, and through the Chinese Consumer Network web. As a consumer, I really enjoy doing something useful for The Collaboration and for my country.

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Patients for Patient Safety: Patient Champions (WHO) in CCNet

‘Patients for Patient Safety’ is a World health Organization (WHO) program (www.who.int/patientsafety/patients_for_patient/en/) that began in October 2004 as part of the WHO World Alliance for Patient Safety. An international Patients for Patient Safety
workshop was held in November 2005 that led to two major outcomes, the ‘London Declaration’ (www.who.int/patientsafety/patients_for_patient/London_Declaration_EN.pdf) and identification of ‘WHO Patient Champions’, of which there are now nearly 100.

The strength of the Cochrane Consumer Network (CCNet) as a network of international consumers is very evident in that CCNet has seven of the first Patient Champions in its membership, from Argentina, Australia, Canada, China and Italy. What CCNet members are particularly able to contribute is a good understanding of the importance of effective healthcare intervention. This involves a commitmentto an evidence base to health care, a balance of potential benefits and harms of healthcare interventions and a strong health system approach to accessible, safe and appropriate health care.

A little more about ‘our Champions’

Silvana Simi (Italy) is particularly concerned about “the importance of letting patients speak for themselves, as they possess the experiential knowledge of their disease and are an incredibly under-used resource for judging the quality of service, care and how the system works or not”.

Anne Lyddiatt (Canada) has been fortunate to speak to groups about various aspects of patient safety – the concerns and some of the possible solutions including electronic health records. Her ‘day job’ is National Trainer for a volunteer program that is part of the educational program for medical students and residents at 13 Canadian medical schools.  All the volunteers are patients who offer a wealth of disease and treatment experience to share with healthcare practitioners. The sessions with medical students and residentsoffer an ideal opportunity to discuss the safety issues from both the patient and provider aspect as well as highlight the resources on EBM available through The Cochrane Library.

Kathy Kovacs Burns (Canada) finds that patient safety initiatives can be distinctively identified as such or can be incorporated in other more general health or patient-centered initiatives.

Durhane Wong-Rieger (Canada) is currently serving on Health Canada's Expert Advisory Group on Vigilance of Health Products (surveillance of drugs and other health products).

Mingming Zhang (China) builds on her experiences as a Cochrane consumer advocate to promote patient safety in China and to work toward a more compassionate relationship between doctors and patients. Mingming sees that her role is to raise awareness about the need to foster a patient safety culture among health professionals and patients and to help educate both patients and clinicians to prevent avoidable harm.

Stephanie Newell (Australia) finds that her personal experience of medical error has strongly motivated her to actively partner with others for positive and effective changes and the safe care of patients.

Claudia Cattivera (Argentina) created a website containing health information in Spanish for consumers and patients (www.pacientesonline.org) and is part of a Pan-American Network of patients for Patient Safety. Patientesonline and the Argentinean Cochrane Center IECS have set up a mutual association between physicians and patients.

Sara Yaron (Israel) with Yael Applebaum, Ministry of Health find that their major efforts have focused on founding a national organization in line with Patients for Patient Safety. They have recruited additional patient activists and healthcare professionals to form a founding committee to implement hard-learned lessons gathered from the experiences of others around the world, adapting them to their local culture. They seek the participation of all stakeholders.

Activities include the preparation of dedicated standardized forms for patients to report safety issues they encounter. Efforts are being made to include input from patients when investigating medical errors and to encourage structured mediation between involved partners after errors and mishaps happen, before litigation takes over.

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Resource poor environments and health consumers

Cochrane consumers come from many countries of the world and live in very different circumstances. The opportunities for safe and effective health care differ markedly for the various populations across the world. The Cochrane Collaboration aims to produce systematic reviews of best evidence about healthcare interventions that are relevant across health services. When resources are scarce it is particularly important to make use of interventions that are effective. 

A developing country is defined by its:

• gross domestic product (GDP) – the gross national product minus the net payments on foreign investments;
• health challenges      
• infection and life expectancy
• malnutrition and infant deaths.           

Health care in resource-poor environments is limited by availability of:

• healthcare providers;
• injury prevention and public health;    
• medicines;
• effective communication.

Information is a powerful tool that can create change.

There are of course good hospitals, good housing, well-fed children etc. to be found in developing countries; while in the developed world many people live in or seek healthcare in low-resource situations.

Resource-poor environments 

The lack of financial resources contributes to the incidence of disease, restricts public health programs, and limits the use of technology and translation of evidence into practice.

People in low-resource countries experience:

• high rates of infectious diseases (such as malaria and water-borne diseases, HIV/AIDS, tuberculosis;
• significant malnutrition and nutritional deficiencies – often associated with insecurity about food, inadequate diet, and infections (including rotavirus diarrhoea, measles);
• low life expectancies and high infant death rates;
• poverty and inequality;
• underdevelopment of resources.

High rates of infectious diseases limit life expectancy

In some countries the spread of infectious diseases threatens improvements in life expectancy. In Central Africa, where the spread of HIV infection is disproportionately high, life expectancy has begun to fall – in contrast to developed countries where improvements in public health, living standards, medical technology and improved care of people have led to a steady increase in population life expectancies.

Malnutrition and nutritional deficiencies: infant deaths

In less developed countries infant deaths are common as a consequence of the following:

• living areas often inadequate and unsanitary;
• many infants weakened by infections and malnourishment;
• medical facilities scarce, often reliant on medical assistants or clinical officers rather than doctors;
• interventions not available.

Many communities are exposed to infectious, parasitic, communicable, and other disease risks associated with poor sanitary conditions and malnourishment. Significant causes of deaths in children under five years are respiratory diseases — pneumonia, tuberculosis, and influenza — and diarrhoea. Measles and other infectious diseases are also major causes.  

The typical healthcare experience 

For a person living in the less developed world, they are likely to:

• present to a health centre some time after the health problem first developed;
• self-medicate with traditional treatments or even prescription drugs;
• go to inadequate facilities, where diagnosis may be difficult and delayed;
• experience difficulties with referrals, if needed;
• have problems because of shortages of trained staff; 
• be unable to afford or keep to the recommended treatment.

[Taken from: Is Evidence-Based Medicine Relevant to the Developing World? Chinnock P, Siegfried N, Clarke M (2005) PLoS Med 2(5): e107]

Deaths of Children under Age 5 by Main Cause in Less Developed Countries, 1995

Source: UNICEF, The State of the World's Children, 1998.

http://www.prb.org/Content/NavigationMenu/PRB/Educators/Human_Population/Health2/World_Health1.htm

Information is a powerful tool that can create change

Only about 10% of global resources for health research are spent each year on addressing 90% of the world’s health problems; that is, caused by diseases and conditions that are major sources of ill health in resource-poor countries. [The Global Forum for Health Research - LINK]

Most providers in developing countries are unable to access and use the information they need to deliver safe, effective healthcare with the limited resources they have available.

Information is a powerful tool and can create change – particularly if governments and communities are engaged together.

From the Mexico Statement on Health Research – Knowledge for better health: strengthening health systems, 2004 [LINK]

Recognize that

Health policy, public health, and service delivery should be based on reliable evidence derived from high quality research. Research evidence comes from various sources, including those that illuminate personal and cultural values and differences, draw on the needs of patients and providers, and measure the benefits and potential risks of health interventions. Ignoring research evidence is harmful to individuals and populations, and wastes resources

The findings of high quality research should be not only accessible to decision makers but also communicated in ways that effectivelyinform policy, public health, and health care decision making. [Lancet 2004 (18 July); 364: 295-300) by Fiona Godlee, Neil Pakenham-Walsh, Dan Ncayiyana, Barbara Cohen, and Abel Packer. http://www.inasp.info/health/globalreview/Lancet.html]

Looking to the future and health consumers in resource-poor countries

These web pages aim to work toward providing evidence-based hands-on information for low and middle level health manpower to use in educating poor and illiterate consumers at different community settings. Consumer summaries on topics relevant to developing countries posted on distinct web pages are more likely to save the time and resources of the few motivated consumer health educators, who have very limited access to the internet. This initiative will have a multiplier effect since information from the web pages could be replicated, duplicated and shared using different kinds of media relevant to the target communities.

With special thanks to Paul Chinnock (Senior Editor, PLoS Medicine) for comments on this document.

Lay health workers in primary and community health care

Introduction

Community lay health workers were introduced into low and middle income countries stimulated by a primary healthcare approach adopted by the WHO at Alma-Ata (1978) as a means to reach universal access to health services. Later on, the emphasis on community participation and health sector reforms (such as decentralisation) alongside with new healthcare challenges like the AIDS epidemic emphasised the importance of these community health workers.

High income countries also utilise lay health workers stimulated by the need for improved care for people with chronic illnesses. (These include cancer, epilepsy, and mental illness.) Partnerships between health systems and community-based organisations help to provide health care to minority communities and to support consumers for a wide range of health issues.    

What is known

Lay health workers are usually people without any healthcare related qualifications who are trained to conduct specific healthcare activities at primary and community levels. They are usually voluntary, although some can get paid by the community. Some examples are community health workers, village health workers, cancer supporters, birth attendants who promote health, manage illness or provide support to patients. They carry out functions related to healthcare delivery, some normally undertaken and others not normally undertaken by health professionals.

What the synthesised research says

Involving lay workers has been researched in depth with controlled studies in only limited circumstances.

Overall, involving lay health worker appears to be effective in some kinds of healthcare activities. When compared to usual care, lay health worker programmes increased uptake of immunization (vaccination) in children and adults and improved health outcomes in people with lung infections and malaria. Having lay workers involved may also increase the number of mothers breastfeeding their infants. One study showed a decrease in the number of deaths in the elderly through providing home-aide services. The effect on increasing uptake of breast cancer screening was small.

There is not enough evidence to show to what extent lay health worker programmes are better than other ways of delivering health care in a wider set of conditions and settings (for example, managing high blood pressure or helping alcoholics or supporting mothers of sick children). It is also not clear how lay health workers can best provide services and how much training they need to be effective.Forty-three randomised controlled studies met the inclusion criteria, involving more than 210,110 consumers. Most were conducted in high income countries (35 studies), but nearly half of these focused on low income and minority populations (15 studies).

Some studies (15 in all) could be grouped according to the health care activity:  promotion of breast cancer screening, immunisation and breastfeeding, and improvement of the diagnosis and treatment for acute respiratory infections and malaria.

Promising benefits in comparison with usual care were shown for promoting immunisation uptake in children and adults (RR 1.3, 95% CI 1.1 to 1.5) and to improve outcomes for selected infectious diseases (RR 0.7, 95% CI 0.6 to 0.9). There appears to be a place for lay health workers in promoting breastfeeding but their effect in promoting breast cancer screening uptake is small. The outcomes analysed in the remaining studies were diverse.

How it was tested

The researchers searched the medical literature for controlled studies that would help to determine whether lay health worker programmes are effective. Most of the 43 trials found took place in North America, 24 in the U.S.A. and four in Canada. A further five studies were based in the United Kingdom and Ireland. Other studies were from Mexico, New Zealand, Australia, Tanzania, South Africa, Ethiopia, Thailand, India, Bangladesh, and Taiwan.

In 28 studies the intervention was delivered to patients based in their homes. Four interventions were based solely in primary care; a further nine studies involved a combination of home, primary care and community based interventions. One study involved people living in temporary (transitional) housing facilities and one study used local church facilities. In fourteen studies a non-governmental organisation, charitable organisation or community group was responsible for some part of organisation, training and delivery of care. Consumer involvement was integral to the intervention in eleven trials - most often in these trials former sufferers of a particular health condition were recruited to deliver the intervention to current sufferers or people from the community.

General cautions about the evidence

The lay health workers in these trials may have received more attention than is usual. On the other hand, their effectiveness compared with ‘usual care’ was followed for a relatively short period of time. Few studies described how the services linked with other health system components and similar services delivered by professionals (substitution of services). Only about half of the studies were explicitly for low income or minority consumer groups.

Patient support organisations, programs in schools or lay health workers in hospitals were not included in this review.

Source

Lewin SA, Dick J, Pond P, Zwarenstein M, Aja G, van Wyk B, Bosch-Capblanch X, Patrick M. Lay health workers in primary and community health care. The Cochrane Database of Systematic Reviews 2005, Issue 1. Art. No.: CD004015.pub2. DOI: 10.1002/14651858.CD004015.pub2.

Improving water quality to prevent diarrhoea

Interventions to improve water quality, particularly when implemented at the household level, are effective in preventing diarrhoea in settings where it is endemic.

Diarrhoea is a major cause of death and disease, especially among young children in low-income countries. Loss of fluid (dehydration) is the major threat, though diarrhoea also reduces the absorption of the nutrients, causing poor growth in children, reduced resistance to infection, and potentially long-term gut disorders. This review examined trials of interventions to improve the microbiological quality of drinking water. These include conventional improvements at the water source (eg protected wells, bore holes, and stand posts) and point-of-use interventions at the household level (eg chlorination, filtration, solar disinfection, and combined flocculation and disinfection). The review covered 38 independent comparisons from 30 trials that involved more than 53,000 people. In general, such interventions were effective in reducing episodes of diarrhoea. Household interventions were more effective in preventing diarrhoea than those at thesource. However, differences in the interventions and the settings in which they were introduced, as well as the methods and measurements of effect, limit the extent to which generalizations can be made. Further research, including blinded trials and longer-term assessments, is necessary to understand the full impact of these interventions.

Source

This record should be cited as: Clasen T, Roberts I, Rabie T, Schmidt W, Cairncross S. Interventions to improve water quality for preventing diarrhoea. Cochrane Database of Systematic Reviews 2006, Issue 3. Art. No.: CD004794. DOI: 10.1002/14651858.CD004794.pub2.

Examples of review titles for the different groups

For each of the Collaborative Review Groups you can see here a list of some of the of reviews held within The Cochrane Library indicating the particular areas of health care for each of these groups.

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For Cochrane review groups and fields

The first thought a review group may have about consumer involvement is that it looks like 'a lot of work', and review group coordinators and others in the editorial team are already very busy. The question becomes: 'Will it be worth it'? Yet many review groups find their consumers to be a real asset.

Some of the challenges

Many researchers, including those involved in Cochrane review groups, have little or no experience of involving consumers in their work. Some may even find that the prospect of involving consumers causes them anxiety.

Some groups choose, for practical reasons, to collaborate with consumers based in their own country. However, as access to the internet and electronic communication becomes more widespread, this factor will be less important. It is important to involve consumers from a range of countries, both in the developed and the developing world.

Consumers can be useful

• Consumers can help to ensure that issues which are important to consumers and, therefore to your Cochrane group, are identified and prioritised.
• Consumers can help to ensure that research doesn’t just measure outcomes that health professionals consider important. Sometimes, researchers can fail to identify outcome measures that are important for consumers, and this can have important implications in the acceptance of the review's findings by those more directly affected.
• Consumers can help spread the results of reviews and work to contribute to the implementation of changes in health care.
• Many voluntary organisations carry summaries of the latest research in their magazines, written in user-friendly language - they may work to ensure that people receive care based on the latest research evidence.
• The involvement of consumers is one of the goals of The Cochrane Collaboration.
• How can we contact consumers?

While review groups may be more than willing to involve consumers in their work, it can often be difficult to find people who have the time and interest to get involved. Most consumers work with Cochrane issues in their spare time and may, by definition, have health problems that can stop them from doing as much as they would like. In addition, not all of the issues that the review group covers are of interest or relevance to each consumer and some reviews are very technical. Contact with quite a large number of consumers may, therefore, be necessary if the review group is to get enough consumer input into their work. Consumers who find that their particular interests have a low priority with the review group may lose interest and cease to participate in the group’s work.

Possible ways of involving consumers

• If you already have consumer representatives, ask them for advice and help to contact other individual consumers and consumer organisations or even virtual (internet) groups who have listservs.Encourage organisational membership in your area, including cultural groups.
• Prepare articles for consumer magazines, web sites and newsletters are helpful.
• The Musculoskeletal Group, for example, prepares summaries of its reviews to appear on the Canadian Arthritis Society web site.
• A field, the Cochrane Neurological Network, speaks at patient/consumer group meetings and conferences and includes information on its web site for consumers.
• Communicate openly, efficiently and effectively with consumers.
• A moderated e-mail list provides access to a group of consumers who are familiar with commenting on Cochrane reviews.
• Use brochures describing the work of The Cochrane Collaboration and a particular Cochrane group. These may be available in different languages, for example, you can find Danish, Finnish, Norwegian, Polish, Russian and Swedish versions of The Cochrane Collaboration brochure at the Nordic Cochrane Centre web site (http://www.cochrane.dk/).The Cochrane Consumer Network website includes a number of materials such as an Orientation Folder and a resources notebook for Consumers in Research – systematic reviews from a consumer perspective for you use.

Potential consumers can be contacted by sending e-mails or letters of invitation to consumer organisations. If you do this, provide clear, unambiguous information about:

• why you are approaching the organisation;
• what you are asking from them and their members;
• what resources you can offer to enable effective contributions;
• what you hope the consumers and the organisation might get out of it.

We need to ensure that consumers are happy and feel valued.

The Cochrane Consumer Network (CCNet)

CCNet is available to any active consumer within the Collaboration. Its mission is to enable and support consumers in contributing to the function of collaborative reviews groups and other Cochrane entities. The Network offers: communication with other consumers and groups, a sense of belonging, links with consumer and patient groups, and dissemination of information from Cochrane reviews.

Other sources of consumer input

Despite their best efforts, Cochrane groups at times find it difficult to recruit consumers. This may be due to the fact that the healthcare condition they focus on is too short term to attract consumer involvement, or because it carries with it a social stigma.

In cases such as these, other approaches may be useful:

• using someone who can look at a protocol or review from a non-specialist point of view and attempt to raise the questions that a consumer might raise;
• looking at relevant patient group online discussion lists for an idea of the issues that are being discussed in consumer circles; ethical aspects associated with the use of online discussion lists have been discussed (see Ethical issues in qualitative research on internet communities by Eysenbach and Till, BMJ 2001; 323:1103-5);organising focus groups or interviews among relevant patient groups;
• carrying out a review of the research literature on patient information needs and experiences ;
• Other sources of insight into the patient perspective including the Dipex web site (http://www.dipex.org/EXEC/0/04COE) which presents British patients’ experiences with a range of illnesses.

Possible ways to support consumer involvement

Identify a consumer coordinator

The Pregnancy and Childbirth Group, which is a large group with many consumers, has three regional co-ordinators one of who is employed on a part-time basis to oversee the work of the consumer panel. In other groups, unpaid volunteers may fill this function; their roles may also differ. Ann Qualman from Canada serves as the consumer co-ordinator for the Musculoskeletal Group and Nete Villebro for the Cochrane Anaesthesia GroupProvide resources to encourage effective involvementMost consumers are in jobs unrelated to research or to The Cochrane Collaboration. It is important to remember that their travel, phone, printing, photocopying and other expenses will not be covered by their work place. Think how you may be able to resolve the practical problems that hamper consumer involvement in your group and offer to cover these costs. For a number of years now, the UK Cochrane Centre has given free registration, and in some cases paid travel fees and accommodation, for consumers wishing to attend the annual contributors meeting.

Encourage consumers to support each other

This is one role of the Cochrane Consumer Network. The moderated e-mail list provides an avenue for such support;

Enhancing access to Cochrane reviews and information by consumers and consumer groups

Enhance web site accessibility

Address language problems

These may be caused by medical terminology or involving consumers who speak a language other than English. It may be helpful to have a glossary and to translate some materials.

Provide consumer friendly guides and checklists for commenting on reviews

Use this web site and the materials that has been developed.

Provide training

Perhaps in conjunction with a Cochrane Centre and/or the Cochrane Consumer Network, the Annual Colloquium also provides trainingopportunities. Non-Cochrane groups that provide training in critical appraisal include the UK based Critical Appraisal Skills Programme.

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