• The Cochrane Consumer Network
• Why consumers in Cochrane
• Creating the way for consumers
• 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
• Barriers to consumer participation in the Cochrane review process

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 encourages the concept of evidence-based practice with a forward thinking approach to improvement of health care.

The Cochrane Consumer Network believes that consumer participation aids the development of high-quality and relevant systematic reviews, and that these reviews can actively inform evidence-based practice in health care with effective dissemination.

Communication is via a moderated e-mail list. E-mail enables communication between consumers and people within The Cochrane Collaboration who are involved in consumer participation. To participate, send an e-mail to: ccnet-contact@cochrane.de

The Consumer Network also:

• provides links for consumers to Cochrane groups;
• develops materials, training materials and workshops to facilitate effective consumer participation and accessibility to Cochrane reviews by consumers;
• maintains these web pages;
• publishes regular newsletters;
• provides an avenue for consumer representation, including from developing countries.

A note about the term 'consumer'

Join our e-mailing list

To have contact with people who are interested and involved in consumer participation within the Collaboration, join our moderated e-mailing list by contacting us.

Often a review group will ask for consumers to comment on a protocol or review or to set priorities for review topics through this list. Following the list is a good way of knowing what is happening with the Collaboration.

Membership forms

Completion of a membership form helps us find you a place in The Cochrane Collaboration, to inform you of important events, and to give you the opportunity to participate in activities.

Where we can meet

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Why consumers in Cochrane?

A consumer perspective on systematic reviews is important. Lead review authors generally consider a question for a review because of their own experiences as a provider of health care in a clinical environment or through healthcare research and discussions.

• 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 that language is sensitive to consumers;
• weigh up the benefits of a healthcare intervention against the potential harms – only consumers can identify the issues that are most important for themselves and their families or carers;
• give a measure of priorities for new reviews. This is possible because developing reviews for The Cochrane Library is ongoing.
  

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

The Coordinator of the Cochrane Skin Group says:

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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Creating the way for consumers

A 'consumer in Cochrane' is an individual with personal experiences that enable an effective healthcare user/receiver perspective to questions addressed in a systematic review. Where such a consumer is not otherwise available, the consumer is someone who looks at a protocol or review from a non-specialist point of view and raises issues that are important for consumers.

Consumers bring an impartial, strong and realistic attitude to the current state of healthcare knowledge and see the value of evidence-based health care and information.

They are able to identify gaps in our knowledge from a consumer perspective and are willing to accept an intellectual or long-term approach to improving health care.

Active consumers seek information from other health consumers and may also support other consumers in providing consumer input into review questions.

What is important for us as receivers of health care, or parents and carers, may differ from the considerations and priorities a service provider has. Shared decision making, extended into input into Cochrane reviews, is important.

Why consumers become involved

Information gained from a consumer workshop held at the Annual Colloquium in Cape Town, South Africa, in 2000, gives the following reasons:

• to have a voice, a say, for instance in setting priorities;
• as a way of getting more health information;
• for international collaboration;
• to gain more competence round health care;
• to know the experts, to 'educate' the experts;
• for clarification of health news we hear or read about;
• to dispel myths.
  

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. Consumer participation in the development and dissemination of reviews is an important aspect of the strategic approach of The Cochrane Collaboration and aims to achieve procedural justice - involving the people to whom Cochrane reviews ultimately apply.

The membership of CCNet has grown from just a handful of consumers to over 580 consumer contributors from at least 55 countries at present. People from many countries across the world, including lower economic status countries, are represented. CCNet is managed by an international Coordinating Team and Advisory Group, has a constitution, and its own strategic planning.

The present Geographical Centres Advisory Group members are:

• Claudia Cattivera (Argentina); Alison Thomas (Bahrain); Raphael de Souza (Brazil); Janet Wale (Australia) and Stephanie Newell; 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); Jordi Pardo and 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 co-opted on to the team to keep the Cochrane Consumer Network well informed. The elected Cochrane Collaboration Steering Group representatives are:

• Liz Whamond (Canada); and
• Janet Wale (Australia).

Silvana (Italy) completed her term of office on the Steering Group in October, 2004; and Godwin Aja (Nigeria) in 2007.

Consumers are appointed to positions on Cochrane Advisory Groups:

• Cochrane News Advisory Group;
• Colloquium Policy Advisory Group - Liz Whamond (Canada);
• The Cochrane Library Feedback Mangement Advisory Group - Kathie Clark (Canada);
• Developing Countries - Godwin Aja (Nigeria);
• Web site Advisory Group; Information Management: Sara Yaron (Israel).

Short-term working groups are formed by CCNet to provide a wider consumer perspective on policies and issues that are important for Cochrane consumers. Recent areas of effort include commercial sponsorship within The Cochrane Collaboration, strategic planning and governance structure for the Cochrane Consumer Network, and web site development.

The annual Cochrane colloquium provides an opportunity where consumers from a variety of countries can meet. Generally the annual general meeting is timed to take place during the colloquium and 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

• designing the protocol and writing the final review;
• assisting with the translation of articles;
• handsearching the medical literature.

• Commenting on Cochrane reviews before publication (Ann acts as such a consumer peer reviewer or referee). Go to Anne's story
• Identifying review topics - consumers and consumer organisations can help determine review priorities by telling review groups about interventions and questions that are important to them and that they would like to see reviewed. Go to Sylvia's story
• Disseminating the results of Cochrane reviews. Go to Cynthia's story | Go to Teenah's story
  Raising awareness of the importance of clinical trials and systematic reviews within the non-scientific community. Go to Elin's story | Go to Maryann's story
• Handsearching healthcare journals for relevant studies. Go to Kathie's Story | Go to David's story
• Contributing to writing lay summaries (synopses) of systematic reviews.
• Recruiting other consumers. Go to Janet's Story
• Translating materials including healthcare articles and newsletters. Go to MingMing's story
• As a consumer editor for collaborative review group.
• Being actively involved in writing reviews, as part of a team. Go to Maxine's story
• Fundraising and identifying sources of financial support
• As consumer representatives on Cochrane advisory groups and the Cochrane Collaboration Steering Group. Go to Silvana's Story

Cochrane disease-based groups ask for your assistance!

The Cochrane group you are interested in may be based in another country, and possibly even another continent. Most communication within the organisation 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. (David Potter of both the Cochrane Skin and Heart Groups).

Stages of consumer input

Title development

A lead reviewer generally considers a question for a review because of their own experiences - as a provider of health care in a clinical environment or through healthcare research and discussions. Consumers experiences can also identify review questions and priorities that particularly concern the end users of health care.

Protocol stage

At the protocol stage, consumers can give input on a number of possible concerns:

• the relevance of the review question to a consumer;
• how well the 'Background’ section explains the importance and purpose of the review;
• what difference the review can make - what the review can and cannot answer;
• how alternative available interventions are considered;
• the participant groups - people taking part in the studies under review;
• outcomes important to consumers;
• possible complicating factors, such as differences between groups of people.

Review stage

At the review stage, consumers are part of the ‘peer review’ team looking at the systematic review before it is published on The Cochrane Library. Consumers contribute by commenting on a number of aspects:

• language and use of terms that make the review hard to understand;
• the sequence of the review and whether it is logical from a consumer perspective ;
• why the review has been researched;
• how the abstract and synopsis summarises the review, and whether important points, from a consumer perspective, are included (a plain language summary is a brief report of the review in simplified language);
• that the 'Review authors’ Conclusions' state clearly what the reviewers have learned from researching the review;
• presentation of the important conclusions for a ‘user/potential user' of the intervention(s).

Points to keep on mind if you wish, or are asked, to comment on a review

• A review uses the best available international evidence (there may not be much)
• The review is confidential until it has been published on The Cochrane Library
• You can consult other consumers about the content of a review, the issues it raises
• You as a consumer form part of a team - others on the team include a service provider or researcher in the same area of health care as the review (content editor), a statistician and members of the editorial board of the Cochrane review group; you are given about three weeks in which to feed back your comments to a review group
• Positive comments are helpful as well as expressions of concern.

Tools are available to help you. These are available from the collaborative review groups and by looking at the Resources section of these web pages.

Note: Consumer input is ideally ‘clearly identified’ to invite feedback from the review authors but some groups find they receive a better response from authors if the consumer comments are imbedded with other editorial team comments. The profile and significance of consumer comments is an area that is under discussion.

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What Cochrane groups say

The Cochrane Metabolic and Endocrine Disorders Group speaks

Why do we need the help of consumers and lay people? The aim of any medical care is to benefit patients. Ultimately, the best person to judge whether any 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….. - what are the interventions that consumers are uncertain about and that they want to know more about? What are their concerns about particular interventions? What measures of clinical outcomes, or endpoints, are relevant to them? - and have we made enough of an effort to present reviews in such a way that they are accessible to the non-expert? At the same time, collaboration with consumers gives us the opportunity to explain to the general public the need for critical assessment of scientific data and of its representation in the media.

And the Cochrane Anaesthesia Review Group (CARG)

Nete Villebro (Denmark) says it is “hard to get people involved!" Nete is Consumer Coordinator with the Anaesthesia Group and is a critical care nurse:

I followed the Anaesthesia Group with interest when it was started in February 2000 and, in autumn 2001, I joined as the Consumer Co-ordinator. Since then, the world has grown very big and now I have connections with people in many countries.
My daily dilemma is that it is hard to get people involved in intensive care unit (ICU) treatment, which is part of the scope of this review group. Most want to forget the experience. As for anaesthesia, hopefully they can’t remember it! Also, how do we get in touch with these people or their relatives? Furthermore, in Denmark there is sparse information about the Cochrane Collaboration and consumer involvement in medical research is unconventional. One of the very special things about CARG is that we don’t have a health organization dealing with anaesthesia, intensive care treatment or rescue medicine, where we can find consumers.

How can we make collaboration attractive?

For us to involve consumers we have to make the co-operation with consumers attractive, especially as this work is voluntary and unpaid. Consumers will be spending their free time on it and therefore it has to be worthwhile for them. A big challenge for me is to make our comments homogeneous and hopefully improve the quality of the reviews for consumers as well as for decisions makers in health care.

Working with non-English speakers

We have now made a Danish homepage with an English version where people interested in collaborating can contact us. We also provide flyers in English, but I need Scandinavian people to help translate the flyer into the Scandinavian languages.
We discuss how to deal with language difficulties by collaborating with review groups from other European countries. We have close connections with the Haematological Malignancies Group in Cologne and we try to build a network across non-English speaking groups.

'Borrowing' consumers from other groups

We build on support from consumers who are organized in other groups. In the beginning it was because we didn’t have any so we borrowed one! But now I see this as a strength because the consumers have experience from other groups.

Dealing with consumer comments

To make the quality of the consumer comments done in a systematic way and in high quality, we are developing a system for dealing with consumer comments to a review of work. We also write review synopses if the reviewers don’t do this themselves.

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;
• looking at relevant patient group online discussion lists for an idea of the issues that are being discussed in consumer circles;
• discussing ethical aspects associated with the use of online discussion lists (see Eysenbach and Till. Ethical issues in qualitative research on internet communities. BMJ 2001;323:1103-5);
• organising focus groups or interviews among relevant patient groups;
• carrying out reviews of the research literature on patient information needs and experiences.

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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 now available in The Cochrane Library.

Cynthia Clarkson (UK): Sharing the results of reviews

Consumers can share the findings with other consumers and consumer organisations so that others can know whether the treatments they are offered work.

Cynthia Clarkson is a consumer with the Pregnancy and Childbirth Group as well as being a volunteer with the National Childbirth Trust (NCT), a UK voluntary organisation supporting women and parents during pregnancy, birth and early parenthood. Cynthia puts the consumer synopses of Cochrane reviews into the mailings that go to NCT volunteer workers so that they can provide evidence based information to women and parents.

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. I have two grown up sons, a husband, a cat and a dog and now await the experience of grandchildren! I have been actively involved in consumer health issues for over twenty years. I have a particular interest in women’s health issues.

I have been involved as a consumer with Cochrane for seven years and have learnt lots. I participate in several groups especially the Consumer Network, and also including the Pregnancy and Childbirth, the Breast Cancer, Airways, and Skin Groups. I have contributed in a variety of ways such as commenting and providing input to protocols and systematic reviews and Hot Topics. I am a member of a review team.

I have been a member of Consumer Network working parties and participated in several training sessions. I have presented a paper at a Colloquium. I have been fortunate to receive stipends to assist to me to attend Colloquia.

I maintain contact internationally with other consumers and with my many Cochrane friends in all parts of the world via e-mail.

In New Zealand I promote Cochrane by means of a column for a national health consumer newsletter. 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”

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 reviewers 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 thousands more read it via Internet subscription services. I also did what I could to get the New York media interested in the story.

Elin Strømme Nilsen (Norway): just getting started

I have a university degree in Nordic languages. I learned about The Cochrane Collaboration through my work as a research assistant within health services research. It has been an important experience for me to see how consumer input can improve the quality of clinical research.

In my spare time I am involved in two different associations of visually impaired people. Through my work in these associations I often experience that consumer input is considered as a duty more than a valuable source of knowledge. My impression is that The Cochrane Collaboration does a considerable amount to evaluate and implement consumer input.

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

I only came to understand more about The Cochrane Collaboration and its different entities when I attended my first ever Colloquium in South Africa in the year 2000. Thanks to Hilda Bastian and the Consumer Network I was able to receive a stipend for my travel. It was in South Africa that I decided to join the Cochrane Airways Group. My experience with this group has just been splendid. The group coordinators, Steve and now Toby, were very receptive and since then have fully involved me in their activities. I get updates and Newsletters about the group. My tasks include commenting on protocol and systematic reviews. As a member of the African Consumer Network, we have also been able to recruit more members and organize workshops to raise awareness about the importance of evidence based health care and about The Cochrane Collaboration.

To a larger extent, Cochrane information still needs a lot of exposure in Kenya and other African Countries. Limitation to this effort has been funding, which has not been forthcoming. Back home, I have been promoting links of Cochrane to other organizations and individual consumers who have specific interests as far as evidenced based health care is concerned. I have always been a firm believer in the need to demystify medicine; simplify it so as to enhance easy understanding of some of the loaded terms used that cause a layperson not be aware of what is ailing him or her, and ,therefore, the best medication required. Doctors should at least try and speak in the layperson's language.

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. Through Exchange I became aware of the Cochrane Skin Group and attended their Consumer Forum last November. This led to my becoming involved in hand-searching dermatology journals.

At this meeting I 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. The first clinical trial reported was in 1948.

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 were 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 the actual benefit of the treatment.

Thus the task of the Cochrane Skin Group is to search all dermatology journals over the past 50 years and identify all randomised clinical trials (RCTs) and controlled clinical trials (CCTs). One computer search found 59 references. Searching the same journal by hand showed that the computer had missed 37 references. Hence all journals must be searched by hand. If done properly, this need only be done once. New trials are tagged so that they may be identified by computer. 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). Reviews are available to users on a CD-ROM.

I visited the Medway Hospital and the Kent and Canterbury Hospital medical libraries and listed all the dermatological journals available. This information was sent to Finola Delamere (Trial Search Coordinator) who in return sent me introductory notes, guidelines and examples followed by a set of 15 test papers to hand search. I was pleased to have done well in the test and have recently begun my first real search – British Journal of Dermatology, 130 (1994). In my first session I managed to search 45% in three hours. As I explained to Finola, the interesting material distracted me. I’m sure I can do better! I look forward to making a significant contribution.

Handsearching is a chore but a necessary one

I began by handsearching the British Journal of Dermatology but since completing my first five volumes, I have not been asked to do any. Hand searching is a chore, but a necessary one. I have offered to continue.

Fortunate to have my first contact with Cochrane through the Skin Group

I enjoy commenting on protocols etc. I have commented on two protocols for the Skin Group and, through my connections with this group, have become involved in giving a consumer viewpoint on some proposed clinical trials. I was very fortunate to have my first contact with the Collaboration through the Skin Group, because it is committed to involving consumers in its work

Consumers can spread the word

Once I was in contact with the Cochrane Consumer Network (CCNet), I really began to have a broader view of what consumers can do for the Cochrane Collaboration. I am very committed to the Consumer Network and work with other consumers to further its work both here in the UK and worldwide. I also believe strongly that consumers have a great opportunity to spread the word of the Cochrane Collaboration to the public at large. Having become involved in the Consumer Network, I carried out a survey of 'Consumer Involvement with Cochrane Review Groups'. I have been involved in three workshops for consumers. The latest, in Stavanger, comprised a short talk about my experiences. Since the first Hot Topic produced by the Cochrane Consumer Network, I have commented on most of the draft documents. I have been Consumer Representative on the Advisory Committee to the Cochrane News for two years. This year I have been on the Cochrane Consumer Network Governance Working Group.

My most recent adventure is to commit myself to a review on the subject of food spreads such as Benecol spread and Flora pro-active, which it is claimed reduce the concentration of cholesterol in the blood. This will be done in collaboration with the Heart Group. I have also commented on one protocol for the Heart Group.

This article first appeared in Exchange No. 93, June 1999, p12. (The Quarterly Journal of the National Eczema Society) and is used with permission of the National Eczema Society (www.eczema.org).

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.

She is also a Patient Champion for the WHO Patients for Patient Safety program.

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.

Anne was one of the many people in Canada and elsewhere who were influenced by Ann Qualman, the previous Cochrane Musculoskeletal Group Consumer Coordinator. Ann passed away in 2007 after many years of dedicated service to people with arthritis in Canada and to the Cochrane Consumer Network. She will be remembered for many things including the following statement.

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

In the photograph Ann discussed 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”

I am an Italian scientist working in the field of degenerative diseases. I live in Pisa, the town with the famous leaning tower, with my husband and two daughters.

I first heard about the Cochrane Collaboration (CC) when my eldest daughter was diagnosed MS. Searching on the Internet for more information on MS, I came across the CC and realised that the Cochrane MS Group was in Italy. Surprisingly, I’d never heard about the Collaboration before.

Medicine must be a patient-centred discipline

Consumer representative in the Collaboration Steering Group

During these years, I gave lectures; I participated in peer reviewing of protocols and reviews and contributed to workshops and meetings, always stressing the importance of consumer involvement in any step of the health care decision-making process.

Getting past the English barrier

A second, but not less important objective was 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). I personally prepared the last two translations on the effects of interferon and aminopyridines in MS. These translations had been checked either by Prof. Graziella Filippini, as Co-ordinating editor of the MS Group, and the Italian Cochrane Centre before publication.

Disseminating the results of systematic reviews

Very recently, as MS-RG, 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. This enterprise has been very successful particularly with the Greek MS Society: the abstracts of the systematic reviews will be translated in Greek and then re-translated in English from the Greek version in order to make sure that the contents will not be modified during the translation phase. The final version will be sent to Prof. Graziella Filippini for final approval, before its dissemination. Links with other entities from Albania, Macedonia, Bosnia and Turkey have also been established.

Improving the consumer’s involvement in the editorial process

Last but not least, we are preparing a new proposal for reviewers in order to increase and improve the consumer’s involvement in the editorial process. Since not all consumers are able to read English papers, we are going to ask the contact reviewer of each proposed review title, to write a short and simple paragraph describing the aim of their systematic review. This will be translated from English into Italian and circulated to all our consumers in order to assess whether the described goals fulfil the expectations of our consumers. Feedback will be sent to the contact reviewer for consideration.

Janet Wale (Australia): “Networking is rewarding”

The Heart Review Group recently sent out a general email to say that they needed more consumers to comment on protocols and reviews that were coming up: “We the Heart Group have very many reviews that need consumer input. Please contact me if you would be interested in reading and commenting on Protocols and Reviews in Heart Disease. I can send you a list.”

I am a member of a Health Consumer Group in my hometown and was able to ask one of my colleagues who, although apparently young and vital, has a serious heart condition. Because she has learned so much from her personal experiences Karen was only too willing to join the Heart Group as a consumer.

Similarly through my contact with this same consumer group, I approached someone who co-ordinates a cancer support group to canvas for people who were willing to become consumers with the Haematological Malignancies Group.

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

No need to be a researcher or a scientist

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? But I knew I could not do it alone.

Meeting deadlines can be frustrating

I persuaded Chris to share the authorship of the review and Eugene continued to help us with photocopying. At the time a GP whose husband has vitiligo wanted to be another co-author. We were delighted. It seemed that her experience with writing reviews would be valuable but this was not the case as she was not familiar with Cochrane methods. Arranging meetings was difficult too as Chris and I, both retired, had to fit around her free time. Allocating tasks and meeting deadlines could be frustrating. In spite of this we made progress, albeit slow, but we were somewhat relieved when she went to the States and eventually was unable to continue to work on the review because of her commitments.

A sense of achievement

As two retired consumers we felt very isolated at times needing a lot of support and guidance. We did not have the benefit of the infrastructure of a workplace but were fortunate to get some financial help from the Vitiligo Society. To begin with Chris was not very computer literate but improved a lot after a course and now we rely on emails as well as meetings and the telephone. The Skin Group is a long way away in Nottingham but has always been supportive, producing templates and model documents. A couple of meetings early on with the editors and Trial Search Co-ordinator answered many of our questions. 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.

Discussions with others helped tremendously

Then a series of personal problems and ill health slowed us down for spell. We began to feel that the review would not get done. We needed some help with the process. That is where the Stavanger colloquium proved very useful. Discussing the review and the problems with others helped tremendously. We did not have to re-invent the wheel and I had an offer of help from Steve Milan who has been very encouraging, offering very practical advice, which put us firmly back on track. We now have a completed review.

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 has since supported my involvement in consumer work. I have received stipends to attend two Cochrane Colloquia, where I have continued to share my experiences and learn more about consumer issues.

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. The December issue (page 11) of the Consumer Network newsletter (see: www.cochrane.org/newslett/index.htm) profiled these people. What CCNet members are particularly able to contribute is a good understanding of the importance of effective healthcare intervention. This involves a commitment to 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 residents offer 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. When participating in the activities of the Collaboration, we are asked to keep the diversity of the world in mind. These web pages set out to give background to the issues especially relevant to health care in resource-poor environments.

The Cochrane Collaboration aims to produce systematic reviews of best evidence about healthcare interventions that are relevant throughout the world, whatever the level of resources available for providing care. Indeed, when resources are scarce it is particularly important to make use of interventions that are effective and not to waste money and effort on those that are ineffective.When we talk about ‘resource-poor environments’ and ‘developing countries’ we are talking about the majority of the world. This makes it important that CCNet makes special efforts to ensure that its activities are relevant to people living in these situations. 

These web pages set out to:

• increase awareness among consumers in Cochrane to some of the challenges faced by this ‘majority world’ in terms of health care;
• provide a forum for consumers from resource-poor areas to share their concerns and special needs;
• recognise that some populations in more developed countries are also underprivileged in terms of health care;
• give some plain language summaries of relevant reviews: lay health workers; improving water quality to prevent diarrhoea.

“I came to appreciate that although we face challenges in health care and research in Canada, countries in the Third World face far more serious difficulties and barriers to basic services.” (Canadian consumer at the Cochrane Colloquium in Ottawa, 2004)

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, and in the developed world there are certainly many people living in or seeking healthcare in low-resource situations. However, the kind of problems we have described here are far more common in those countries defined as 'developing' than in those which are considered 'developed'.

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.  

Of note: in 2000, world infant mortality ranged from 2.6 per 1,000 births in Iceland to 157 per 1,000 in Sierra Leone. Approximately one third of the world’s children suffer from protein energy malnutrition, which is the most deadly form of malnutrition. It directly or indirectly causes around half of the nearly 11 million annual deaths of children under five (WHO, 2000). In Zimbabwe, AIDS causes 70 percent of the deaths among children less than five years of age.

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

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 their health problem first developed;
• self-medicate with traditional treatments or even prescription drugs;
• have to go to inadequate facilities, where diagnosis may be difficult and delayed;
• experience difficulties with referrals, if needed;
• if a child, he or she may be malnourished;
• if a woman, she may be anaemic;
• have problems because of shortages of trained staff;
• …..because of poor infection control;
• …..because of lack of follow-up care;
• 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]

Healthcare providers are very important for health systems in resource-poor settings – they are in short supply, particularly in remote areas.

• Schooling is inadequate.
• Once through school, going on to medical, nursing and healthcare training may be very difficult.
• Funds are often inadequate to pay enough health workers enough money.
• It is hard to keep healthcare workers (that is, to stop them going overseas).
• There are many difficulties to overcome with in-service training – and keeping knowledge up to date.

Communication difficulties arise from:

• inadequate power supply;
• lack of computer equipment and information technology support;
• the fact that the necessary software is mainly in English;
• lack of computer skills; and
• resistance to use of technology among health professionals.

Availability of injury prevention and public health (policies)

Public policy responses to injury prevention and public health seem to be very slow in developing countries considering the magnitude of the problem. In 2004, WHO and the World Bank launched the World report on road traffic injury prevention, as an alert to the global community.

Availability of medicines

Interventions, including medicines, are a major expense.

Essential medicines are those that satisfy the priority healthcare needs of the population. They are selected because of the prevalence of disease in a country, evidence on efficacy and safety, and comparative cost effectiveness. The intent is that essential medicines are available at all times, in adequate amounts, in the appropriate dosage forms, with assured quality, and at a price individuals and the community can afford.

The World Health Organisation set up its WHO Model List of Essential Medicines (in 1977) to promote the availability, accessibility, affordability, quality, and rational use of medicines. The list also influences reimbursements, medicine donations to countries and local production of medicines.

The essential medicines focus national medicines policy and evidence-based national clinical practice guidelines so that the health systems have a well-defined basis for training, information, prescribing with the intent of providing treatments for better quality of care.

In 2002, the WHO Model List was modified to include medicines which SHOULD be affordable to all patients, irrespective of cost. Examples are single dose azithromycin for trachoma and anti-retrovirals for HIV/AIDS. The availability of cheaper generic medicines is also important.

Is Evidence-Based Medicine Relevant to the Developing World?

An article written by Paul Chinnock, Nandi Siegfried and Mike Clarke M and published in PLoS Medicine 2005;2(5): e107 (published: May 31, 2005; DOI: 10.1371/journal.pmed.0020107).

PLoS Medicine is an open-access journal published by the nonprofit organization Public Library of Science

http://medicine.plosjournals.org/perlserv/?request=get-document&doi=10.1371/journal.pmed.0020107

The following is a selection of points taken from this article

Wherever health care is provided and used, it is essential to know which interventions work, which do not work, and which are likely to be harmful. This is especially important in situations where health problems are severe and the scarcity of resources makes it vital that they are not wasted. [Volmink J, Swingler G, Siegfried N (2001) Where to practise evidence-based medicine? Lancet 357: 724]

But are the systematic reviews that have so far been published relevant and of practical use to those who provide health care in “the majority world” (i.e., in developing countries?

In our view, the relevance of systematic reviews to frontline health care workers in developing countries has so far been limited, for a number of reasons.

• Most of the reviews produced to date address health conditions that are priorities in the developed world.
• The difficulties of conducting randomized controlled trials in resource-poor situations result in the exclusion of many developing country studies.
• There are also important differences in the way in which care is delivered in developing and developed countries. In developing countries, treatments that would be delivered by doctors elsewhere are often delivered by medical assistants or clinical officers. This may or may not have an impact on the effectiveness of the treatment.
• Is this best done by circulating the reviews themselves, or are reviews merely a stage in the production of more accessible evidence-based health information materials? For example, the World Health Organization's Reproductive Health Library, available on CD-ROM, includes selected Cochrane reviews but also summaries and commentaries that have been specially prepared to provide a developing world perspective.

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 effectively inform policy, public health, and health care decision making

Conscious of the need to

Build and strengthen public trust and confidence in science

Call for action by

All major stakeholders to strengthen or establish activities to communicate, improve access to, and promote the use of reliable, relevant, unbiased, and timely health information

[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 synthesized 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 the source. 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 web site 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 most common ways that consumer became involved in Cochrane

These were identified in a survey by Dell Horey in 2002:

• by personal invitation from a consumer (13%) or someone else involved in the Collaboration (26%);
• as a member of a health consumer group (36%);
• by reading an article about the Cochrane Collaboration (31%);
• When searching the internet for information on a particular health issue;
• at a healthcare conference;
• through Information sent by the Cochrane Consumer Network or acquired through the person’s work place.

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 Group

Provide resources to encourage effective involvement

Most 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

Consumers (and others) may have problems using web-based information because of disabilities, including vision or mobility problems. You can test a web site to see how accessible it is and follow international guidelines to make improvements, as the Cochrane Eyes and Vision Group has done.

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 'Orientation Folder' that has been developed.

Provide training

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

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Barriers to consumer participation in the Cochrane review process

Broad difficulties:

• effectively capturing consumer feedback on protocols and reviews is captured effectively;
• awareness by reviewers of this consumer perspective;
• informing consumers about how their feedback has been used;
• finding consumers and enabling ‘representativeness’;
• training consumers;
• providing support and ensuring that consumers are not exploited;
• mismatch of what medical researchers consider to be important and what consumers are most concerned about;
• the concept and need for randomized controlled trials ;
• ability to express information from Cochrane reviews to others.

Specific barriers for consumers:

• a lack of clarity about The Collaboration and what systematic reviews are;
• uncertainty about consumer tasks in review groups;
• limited training or development of skills;
• uncertainty about time commitments;
• difficulties in finding a role;
• out-of-pocket expenses;
• access to The Cochrane Library, or guidance in its use;
• use of jargon, statistics and acronyms;
• little sense of ‘having made a difference’ in the end product or that consumer comments are utilised;
• communications.

Specific barriers for review groups:

• lack of an adequately large pool of consumers to provide consumers for each review;
• limited ability to support consumers;
• variations in the ‘standards’ of consumer critiquing;
• selection of ‘the right’ consumer for commenting on a review;
• technical content of some reviews;
• lack of feedback from some reviewers.

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