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movement by the World Health Organization Over the past four decades, there has been a (WHO), which was evident in the announcement widespread movement to increase the involve- of their vision in primary health: ÔThe people have ment of patients and the public in health care. As the right and duty to participate individually and 352 Ó Blackwell Publishing Ltd 2005 Health Expectations, 8, pp.352-359 Consumer-driven health care, B Shea et al. 353 collectively in the planning and implementation Box 1 Since 1992, The Cochrane Collaboration has evolved of their health careÕ.1 This vision was soon fol- rapidly, but its basic objectives and principles have remained constant lowed by a strategy for action with the launch of the WHO ÔHealth for AllÕ strategy. The strategy The Cochrane Collaboration is an international non-profit was based on three principles, one of which was organization. It facilitates well-informed decisions about health care by preparing, maintaining and promoting the community participation. By the turn of the cen- accessibility of systematic reviews on the effects of tury, international health agencies were analysing healthcare interventions.
community participation in primary health-care The 10 Principles of the Cochrane Collaboration are programmes and developing effective methods to • collaboration promote involvement.2 Consumer movements in • building on the enthusiasm of individuals health, often accompanied by legislative support, • avoiding duplication • minimizing bias are now features of the international health scene.
• keeping up to date Currently, strategies to effectively foster con- • striving for relevance sumer participation are being developed in all • promoting access stages of research from research priority setting • ensuring quality to utilization. A recent Health Technology • continuity • enabling wide participation Assessment (HTA) Report found over 80 spe- cific efforts to include consumers in identifying and prioritizing health research topics.3 In the UK, the HTA programme integrates public process and uptake, the Cochrane Consumer perspectives by including members of the public Network was created to increase worldwide on advisory panels to inform, prioritize and consumer participation. In addition, many of refine research topics and to peer review research the review groups in the Collaboration are proposals. The HTA equivalent in Canada, the independently endeavouring to include con- Canadian Coordinating Office for Health Tech- sumers in their work.
nology Assessment (CCOHTA), instead focuses The Cochrane Musculoskeletal Group on developing consumer involvement in decis- (CMSG) is a review group that has been work- ion-making committees.4 In primary research, ing to increase consumer participation since its the ConsumersÕ Health Forum of Australia5 is inception in 1993 (Box 2). Members of the dedicated to involving consumers in research CMSG review the literature to determine the projects. Similarly, the INVOLVE group, a best evidence for the interventions of musculo- national advisory group in the United Kingdom skeletal and arthritic diseases such as rheuma- promotes consumer involvement in NHS, public toid arthritis, osteoarthritis, ankylosing health and social care research. Unique to spondylitis and gout. Based in Canada, the INVOLVE is an additional emphasis to include CMSG has embraced the concept of knowledge consumers in communication and research.6 translation as advocated by the Canadian The Cochrane Collaboration, an interna- Institutes of Health Research (CIHR). CIHR tional non-profit organization, also strives to defines knowledge translation as include consumers in the work of their the exchange, synthesis and ethically-sound organization. Over 50 groups of the Cochrane application of knowledge - within a complex sys- Collaboration located across the world pro- tem of interactions among researchers and users - duce and promote systematic reviews of to accelerate the capture of the benefits of research health-care interventions. One of the 10 prin- for Canadians through improved health, more ciples of the Cochrane Collaboration is to effective services and products, and a strengthened health care system.8 Ôenable wide participationÕ, and this includes consumers (Box 1).7 The emphasis is on interactions or partner- As the Collaboration recognized early that ships between researchers and users to facilitate consumers should be active players in the review the use of relevant research in decision making.
Ó Blackwell Publishing Ltd 2005 Health Expectations, 8, pp.352-359 354 Consumer-driven health care, B Shea et al.
Box 2 The Cochrane Musculoskeletal Group concerned with making wise health-care deci- sions, whether he or she is a patient, family The Cochrane Musculoskeletal Group (CMSG) prepares, maintains and promotes systematic reviews of health-care member or caregiver.9 It was felt by the Group interventions for musculoskeletal diseases. Based in that people with a musculoskeletal disease Canada, it has international acclaim and membership as would be able to provide the content expertise well as a broad distribution of its editorial. It currently has and the most relevant patient perspective to the 269 members: 17 active consumers and members from 26 musculoskeletal reviews of the CMSG. There- different countries including eight developing countries.
fore, to obtain suggestions from active con- sumers who might be interested in participating, the CMSG approached the CIHR defines users as researchers, health-care Canadian Cochrane Centre, the Cochrane providers, policy makers, managers, industries Consumer Network, patient groups with similar and consumers. While the CMSG recognizes the interests (such as The Arthritis Society of importance of reaching all users, much of our Canada), health charities and other relevant work is focused on developing relationships with societies. One of our key links was with mem- people with musculoskeletal diseases to enhance bers of the Arthritis Society, who had already consumer participation in research. built their own network of consumers interested Despite a dearth of rigorous evaluations of the in research and advocacy.
benefits of consumer participation, there While most of our consumer members have appears to be a general consensus about poten- musculoskeletal diseases and are active in other tial benefits. Benefits include creating an arthritis groups, they come from a variety of involved community that is better informed and backgrounds and experiences. They include recognizes the value of research and the research retired health-care professionals, writers and process; allowing consumers to influence policy consultants. Most members are also research questions and priorities for more rele- based in Canada although international repre- vant research; increasing the accountability of sentation is advocated within Cochrane. Despite researchers and funding institutions; creating the fact that most correspondence between the opportunities for consumers to ensure research CMSG and its consumer members is electronic, results are communicated to the community in a it has been easier maintaining and developing usable format; and ensuring that the research is relationships with members in the same country used and applied in health care.5,6 To achieve as the editorial base. This national emphasis is these benefits, the CMSG has dedicated likely the result of the cohesiveness of the arth- resources for involving the consumers in all ritis community in Canada. There are many stages of the review process, from setting prior- opportunities for face to face meetings and ities for review topics to synthesizing the best relationship building through strong arthritis evidence in systematic reviews. Consumers are initiatives. These initiatives are supported by the also involved in transferring knowledge to Institute of Musculoskeletal Health and Arthri- people making health-care decisions and in tis as well as the Canadian Arthritis Network. A promoting uptake of the results of reviews. future challenge for the Group is to increase the involvement of international consumers, poss- ibly through contact with arthritis associations Building a network of consumers in other countries and the Cochrane Consumer The first step in involving consumers was to Network.
recruit health consumers. In the Cochrane It has also been a challenge maintaining con- Collaboration, the term Ôhealth consumerÕ sumer membership. Consumer membersÕ inter- applies to anyone who uses, is affected by or is ests change, time and work commitments entitled or compelled to use a health-related fluctuate, and the disease itself affects partici- service. A health consumer is anyone who is pation. Members can also participate as Ó Blackwell Publishing Ltd 2005 Health Expectations, 8, pp.352-359 Consumer-driven health care, B Shea et al. 355 volunteers, working with the CMSG in their ment themselves. The Group now encourages ÔspareÕ time. Without direct compensation for new review authors to consider reviewing this the hours and work provided by the members, literature and current authors to keep these who often have full-time work commitments, reviews up to date. Consumers also identified they may not be able to devote consistent time the need for more drug to drug comparisons, as and work to the Group. To overcome barriers, most systematic reviews focused on drug to the CMSG is trying to recruit a large consumer placebo comparisons. As peer reviewers, con- membership. The CMSG also tries to ensure sumers provide valuable feedback on the clarity that our members do not incur the costs to of the review, the outcomes and the need for themselves while participating in or attending further research. Many consumers have helped Cochrane events (for teleconference calls, park- to identify research gaps, which review authors ing, etc.). The Group has also appointed a include in the ÔImplications for ResearchÕ sec- Consumer Group Co-coordinator (a consumer), tions of CMSG reviews. Concerns about gen- who is closely connected with the arthritis eralizability are often raised by consumers and patient community and is actively recruiting new are again addressed by review authors in revi- members for the CMSG. sions.
When peer reviewing, consumers are also asked Ôwhat points do you think are the most Roles of consumer members important to tell a consumer about this review?Õ With the advice and under the direction of the Responses are fed directly into the content for consumers, a clear (but continually evolving) consumer synopses and summaries of the set of roles for consumers was established early CMSG reviews. In addition, our consumers in the partnership. Armed with the background have been an integral part in the development of information about Cochrane and discussions the format of our consumer summaries. Con- over teleconferences, the group worked with the sumer summaries of CMSG reviews have been consumers to clearly define their areas of continually developed and written over the past contribution. Recently, a number of initiatives 10 years with the help of our consumer mem- were launched to try and define the roles of bers. There has been an ongoing commitment of consumers with the Cochrane Collaboration. the Group and the consumers to provide health These initiatives, including Horey's10 survey of information from our reviews in a consumer- consumers and discussion paper of Wale11, friendly format. Today, our consumer summar- have provided valuable insight into the devel- ies are presented in a question and answer for- opment of new roles for our consumer mat as opposed to a scientific format, which was members. more difficult to follow. Consultation with the The benefits of consumer participation to the consumer group also strengthened the theory CMSG are evident in the specific activities of that consumers need different amounts of our consumer members (Table 1). In general, information to make health-care decisions. For CMSG consumers provide their expertise in this reason each review is written as a short setting research priorities, producing systematic consumer summary, long summary and decision reviews and promoting awareness and use of aid. These consumer summaries are posted on CMSG reviews. Our topics for priority review the Arthritis Society of Canada web site (http:// have recently changed after surveying our con- www.arthritis.ca) and advertised in other Arth- sumer members and their affiliate organizations. ritis Society and Canadian Arthritis Patient Many CMSG systematic reviews focus on drug Alliance communications. This wide dissemin- treatments, whereas the results of the survey ation of consumer-friendly information would clearly indicated that consumers want more not have been possible without the links devel- information about complementary and alter- oped with other arthritis consumer organiza- native treatment options that they can imple- tions that our consumers have helped to build.
Ó Blackwell Publishing Ltd 2005 Health Expectations, 8, pp.352-359 356 Consumer-driven health care, B Shea et al.
Table 1 Role of consumers in the Cochrane Musculoskeletal Group (CMSG) Roles for CMSG consumers Activities Setting research priorities Canvas consumers for research priorities The CMSG scope and topic list and a priority survey were sent to all consumers from the consumer member's relevant organizations for their input. The scope, topics and priority areas for reviews were modified.
Production of systematic reviews Assist with editing of systematic reviews Every protocol and review receives comments from three peer reviewers including one consumer.
The consumer group worked with the CMSG to develop a critical appraisal form for peer reviewing systematic reviews that address consumer issues.
Two consumers are also members of the CMSG editorial board Writing systematic reviews To date, consumers have shown an interest to be part of a team writing a systematic review Promoting awareness and use of CMSG reviews Raise awareness of the CMSG Partnerships were made with musculoskeletal organizations and initiatives OMERACT (Outcome Measures in Rheumatoid Arthritis Clinical Trials, http://www.omeract.org) CAPA (Canadian Arthritis Patient Alliance, http://www.arthritis.ca/ resources for advocates/capa/) TAS (The Arthritis Society of Canada, http://www.arthritis.ca) Bone and Joint Decade (http://www.boneandjointdecade.org) PANLAR (Pan American League Against Rheumatism, http://www.panlar.org) EULAR (European League Against Rheumatism, http://www.eular.org) Patient Partners (http://www.arthritis.ca/programs and resources/patientpartners/) Participate in national and international conferences Consumer members attend and advocate at conferences for Cochrane Collaboration American College of Rheumatology CAPA (Canadian Arthritis Patient Alliance) IMHA (Institute of Musculoskeletal Health and Arthritis) Recruit new consumers to the group 12 new consumers were recruited by consumer members in the past 2 years Translate CMSG systematic reviews into consumer- friendly formats Assist in the development of consumer-friendly Consumer members have been influential in working with formats of CMSG reviews the knowledge translation specialist to develop a template for consumer summaries based on the amount of detailed information consumers want Write and edit consumer summaries Consumer members have written or edited consumer summaries of CMSG reviews. To date 50% of the CMSG reviews have been produced as consumer-friendly summaries in English and French and are available at http://www.
arthritis.ca/look at research/cochrane reviews Publish consumer-friendly research results for With the help of consumer members, consumer-friendly results newsletters have been regularly published in newsletters of arthritis consumer organizations, e.g. The Arthritis Society of Canada print and electronic newsletters and the CAPA newsletter Ó Blackwell Publishing Ltd 2005 Health Expectations, 8, pp.352-359 Consumer-driven health care, B Shea et al. 357 Table 1 ) Roles for CMSG consumers Activities Provide input into research for consumer-related Consumer members were participants, presented and helped knowledge translation to develop knowledge translation initiatives Institute of Musculoskeletal HA Health workshop on Knowledge Translation Defining an effective consumer, CIHR funded grant (CIHR funded grant 2002) Patient partners workshops Assist with seeking funds Consumer members have been part of the team of two CIHR-funded grants in 2001 and 2002 and advocate at national levels in Canada for the Cochrane Collaboration and the National Network of Libraries of Health in Canada engagement. Our members have personally Responsibilities of the CMSG communicated that they feel part of the team and Consumer participation is not a one way street - are also personally benefiting from the experi- the CMSG has learnt from experience that the ence. Many report that peer reviewing is an Group has responsibilities to maintain consumer excellent opportunity to keep abreast of the involvement. It is essential to support consumers current evidence about treatments that affect by providing training, frequent communication them individually and collectively. They also like and acknowledgement of their contributions seeing concrete products of their involvement (Table 2). Meeting these responsibilities has and participation in the group; published reviews resulted in greater consumer participation and and consumer summaries are much more Table 2 CMSG's responsibilities to the consumer members Responsibility Methods Provide support: Respond to the needs of members as Consumer convener appointed (CMSG staff member) participants and peer reviewers and provide support to Consumer liaison/co-ordinator appointed help the consumer group with its tasks (consumer volunteer) Provide clear expectations: Design-specific terms of Development of roles with consumer input reference that describe possible roles for the consumer Communicate: Listen and provide feedback. Give Regular newsletter includes descriptions of consumer consumers reports about how their advice has been activities; consumers are acknowledged in CMSG used and acknowledge the consumer contribution presentations Consumers evaluate performance and process at least once annually The coordinating editor and editors attend one or more organized consumer group meetings and discuss roles Thank individuals for specific and ongoing contributions Provide training: Respond to the needs of consumer One-on-one training members for continuing education in research, Distribution of educational materials systematic reviews and the Cochrane Collaboration Provide funding or avenues for funding to participate in continuing education opportunities Encourage and provide some funding for participation in annual Cochrane Colloquium Provide learning workshops Ó Blackwell Publishing Ltd 2005 Health Expectations, 8, pp.352-359 358 Consumer-driven health care, B Shea et al.
tangible and immediate than some of the results wider expertise, and be reminded constantly to of their advocacy work to change health care and put people and their needs first.13 But public policy. By providing positive feedback about participation in health care and its benefits their participation, our members have described cannot be achieved without the direct involve- that they have a sense of fulfilment and satis- ment of the consumer voice and influence. The faction from the work they do for the Group. effectiveness of that involvement is determined Providing training is one of the key responsi- by the characteristics of both the consumer bilities of the Group that also benefits our con- members and the work environment.12 sumer members. Training is not only in the Consumer involvement in the CMSG builds systematic review process but also in evidence- on the co-operative spirit that exists within the based health care. Our consumers have been Cochrane Collaboration. In the CMSG, staff able to use these skills when advocating for members and the consumer members realized arthritis in general and when participating in early that they needed to work together to other scientific committees. As most of the determine and fulfil mutually beneficial roles and CMSG consumers have the disease background goals. The roles of consumers in the CMSG are and patient perspective, training from the focused on three main areas to ensure more CMSG has focused on increasing the scientific relevant research: setting priorities, peer background of the members and task training. reviewing and translating the results of system- Therefore, training has focused on the skills atic reviews. By involving consumers in setting needed to perform their primary tasks. These the research priorities, the CMSG is more con- tasks include refereeing reviews, making infor- fident that their reviews are timely and relevant mation available in a consumer appropriate to the consumers. Furthermore, by involving format and informing research priorities. consumers in the peer review process it is more Training starts with one-on-one coaching by likely that CMSG reviews answer the questions providing background material on the system- consumers have about health-care interventions atic review process, as well as running consumer for musculoskeletal diseases. With the assistance workshops ranging from basic research orien- of the consumer members, the CMSG is actively tations to appraisal techniques and understand- ensuring that the information from their sys- ing statistics. Continuing education is also tematic reviews is reaching the consumers. The provided through Annual Cochrane Colloqui- CMSG is also ensuring that this information is ums and Canadian Cochrane Centre Symposi- in a usable format so that it can be used in evi- ums. At the 2004 Cochrane Colloquium in dence-based decision making. It is clear to the Ottawa, the CMSG presented and conducted CMSG that the enthusiasm and involvement of workshops on evidence-based health and the consumer group is beneficial and will posi- informed decision making, writing consumer tively affect health care. It is hoped that our summaries and understanding statistics in example of consumer participation will continue Cochrane reviews. The conferences provide to inspire new consumer-driven initiatives.
excellent opportunities to overcome the chal- Partnership with consumers in research, as in lenges of training by e-mail, as well as oppor- healthcare, is essential.
tunities to acknowledge consumer members and maintain relationships and contacts.