In 1998, health professionals involved in the care of patients with musculoskeletal conditions gathered at the invitation of Lars Lidgren, MD, PhD, professor of orthopaedics at the University Hospital in Lund, Sweden, and others in Lund with an ambitious goal: to do for musculoskeletal conditions what neuroscientists and others had accomplished with the Decade of the Brain 1990–2000.1 In their quest to educate world leaders on the increasing impact of musculoskeletal injuries and disorders, the consensus conference participants built on a landmark study conducted in 1993 by Harvard University in Boston and funded by the World Bank. Using disability-adjusted life-years, this Global Burden of Disease project quantified, for the first time, the true socioeconomic cost of chronic disease.2
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The International Bone and Joint Decade (BJD), endorsed by the United Nations, was officially launched in January 2000 at the World Health Organization (WHO) in Geneva, Switzerland. Eight years into its existence, the international initiative is actively partnering with the World Bank and the WHO, has the support of more than 750 national and international patient and scientific organizations and related journals, and carries out its work through National Action Networks (NANs) in over 60 countries. “The Bone and Joint Decade is like a beacon whose width increases daily,” says Wahid Al-Kharusi, MD, director of Khuola Hospital in Muscat, Oman, ambassador to the Foreign Ministry of Oman, and a member of the BJD International Steering Committee (ISC).
Although musculoskeletal conditions are the most common causes of severe long-term pain and disability, public policy makers have historically been more focused on acute and infectious illnesses. “The whole idea of trying to engage the public about a disease that doesn’t kill them is a real challenge,” notes Rowland W. Chang, MD, MPH, professor of preventive medicine, medicine (rheumatology), and physical medicine and rehabilitation at Northwestern University in Chicago.
“The BJD is unique in that it, for the first time, brought together patient and professional organizations from different musculoskeletal disciplines, alongside government and industry, in partnerships to develop and implement programs,” says Dr. Lidgren. “This teamwork enhances the ability of organizations to change the healthcare and research agenda to improve quality of life for the people affected.” Assisted by a small paid administrative staff, the BJD’s ISC, composed of volunteer professionals, chose to focus on some of the more prevalent of the 150 different musculoskeletal conditions: osteoarthritis and rheumatoid arthritis, osteoporosis, low back pain, spinal disorders, severe trauma to the extremities, and disabling conditions in children.
With governmental endorsement in 62 countries, the BJD has fostered innumerable successes in its eight years, from high profile to intensely personal. “What the BJD initially started out to do, we have accomplished in aces and spades,” says Amye L. Leong, MBA, president and CEO of Healthy Motivation in Philadelphia, spokesperson and director of strategic relations for the BJD, and an ISC member. “We have brought together organizations and countries and created awareness among institutions like ministries of health and departments of health and human services of the need for better surveillance and epidemiology work on identifying the prevalence and impact of these types of disorders.”
1998 –Inaugural Consensus Meeting held in Lund, Sweden
1999 – BJD 2000–2010 receives official United Nations endorsement
2000 – BJD launched at the headquarters of the WHO
2000 – First Bone and Joint Decade World Network Conference, in Oman
2003 – Office of the U.S. Surgeon General publishes its first-ever Report on Bone Health and Osteoporosis
2004 – U.N. Stakeholders Forum on Global Road Safety is held at the U.N. in New York
2007 – 1st U.N. Global Road Safety Week is held April 23–29 2007
2007 – U.K. BJD Chair Appointed to National Advocate for the NHS
2007 – Middle East and North Africa announce a consensus on osteoporosis, and develop regional guidelines for osteoporosis care
2007 – World Network Conference and Patient Advocacy Seminar, Gold Coast, Queensland, Australia
2007 – BJD ISC Members Awarded for Outstanding Achievement by ACR
Peter Brooks, MD, professor of rheumatology and head of the faculty of health sciences at the University of Queensland in Brisbane, Australia, and a member of the BJD ISC, points to a particularly notable accomplishment down under. Through the focus provided by the BJD, the Arthritis Foundation of Australia and Osteoporosis Australia persuaded their federal government to declare arthritis and musculoskeletal disease one of its seven health priority areas, alongside cancer, cardiovascular health, and others. Funding is apportioned from the declared health priorities.
The BJD set its sights on decreasing road traffic accidents, which, each year, claim 1.2 million lives and injure 20 to 50 million people. The majority of deaths and injuries occur in young males between age 15 and 44; people in low- and middle-income countries are especially affected.3 “We spend, as a conservative estimate, over $550 billion every year on road traffic injuries,” says Dr. Al-Kharusi. “And yet, traffic injuries were not part of the G-8 Summit Millennium Goals.”
Dr. Al-Kharusi is a member of the UN Road Safety Collaboration, a BJD/Oman partnership begun in October 2002. The partnership has achieved several UN resolutions to put road safety on the agenda for General Assembly proceedings. Its efforts culminated in a 2004 resolution that made WHO the coordinator for the Global Road Safety Initiative. Since publication of the WHO World Report on Road Traffic Injuries (www.who.int/violence_injury_prevention/publications/road_traffic/world_report/main_messages_en.pdf), a number of countries have adopted its best practices and manuals for road safety. In Vietnam, one year after adopting the helmet law for all two-wheeled vehicles, more than 90% of riders are using helmets, and road safety has improved by 60%, according to Dr. Al-Kharusi.
The next step in politicizing the costs of road traffic injuries will be to address their socioeconomic consequences, says Dr. Al-Kharusi. “We do not want just to rehabilitate patients and make them pain free, but we need to return their dignity. They need jobs and a way to earn a living so that they can fulfill their social commitments—marriage, family, et cetera—and be contributing members of their communities.”
The BJD is unique in that it, for the first time, brought together patient and professional organizations from different musculoskeletal disciplines, alongside government and industry, in partnerships to develop and implement programs.
—Lars Lidgren, MD, PhD
Professional Education and Best Practices
Professional education has also been a major thrust for the BJD. ISC member Kristina Akesson, MD, PhD, professor of orthopedics at Lund University in Lund, Sweden, has been involved with the BJD Monitor Project, which, in coordination with the WHO, collects and reviews baseline data against which BJD efforts will be measured. She has also helped develop international curriculum recommendations to further train medical personnel in diagnosis and treatment of musculoskeletal conditions. Initial research revealed that musculoskeletal conditions—almost universally—receive very little attention in regular medical curricula. For instance, a standard medical history usually dictates assessment of all major organ systems—but not the musculoskeletal system. “We think that this is related to the fact that many musculoskeletal conditions are not perceived as a deadly threat,” she says. Curriculum recommendations, which provide for minimum training requirements in assessing musculoskeletal conditions, have now been translated and published in Chinese and tested in Canada, New Zealand, and Australia.
Projects have been varied and have touched all levels, from general practitioners to educators and policy makers, to individual national efforts designed and implemented locally by the National Action Networks (NANs), to broad-reaching international efforts. For instance, the BJD has also partnered with WHO to publish an online practical toolkit for predicting 10-year risk of osteoporotic fracture (www.shef.ac.uk/FRAX) and, in February, released the international recommendations of the BJD Task Force on Neck Pain and its Associated Disorders.
Partnership with Patient Advocates
Since 2000, the BJD has fully integrated research, clinical, and patient-advocacy stakeholders in all its major initiatives. Leong notes that, “it’s not only multidisciplinary; it’s healthcare professional- and patient-oriented. To get an initiative like this off the ground with such high-level, United Nations recognition is a stellar coup for the patient.”
“I think the Decade can genuinely call itself a partnership project, a collaboration,” agrees Neil Betteridge, who grew up with juvenile arthritis. Betteridge has been advocating on behalf of his fellow service users for the past 20 years. Currently head of Arthritis Care in the United Kingdom, he has been advancing the BJD disability agenda through the U.K.’s NAN, the Arthritis and Musculoskeletal Alliance. “[The BJD] did feel, in the early days, much more doctor led, but I think everyone has woken up to the fact that we actually achieve more working side by side.” Policy makers, he points out, “don’t take arguments quite as seriously unless you can claim to be speaking directly for the people who use services.”
[The BJD] did feel, in the early days, much more doctor led, but I think everyone has woken up to the fact that we actually achieve more working side by side.
Different Countries, Different Issues
By conducting its work through national networks, the BJD has been able to balance country- and culture-specific initiatives with available resources and infrastructure. This year, with the conference to be held in India, Leong is especially excited about the opportunity for advocacy building among Asian patient groups. Fostering patient self-management in Asian cultures is challenging, she notes. There is an ethos about pain (you don’t complain) and parity for the expert patient (don’t question the doctor’s authority). “I grew up with the culture of not asking questions, even as a fourth-generation Chinese-Californian,” she says. “Had I continued with not asking questions, I would probably still be wheelchair bound.” (She was diagnosed with rheumatoid arthritis, Sjögren’s syndrome, and osteoporosis by the age of 18 and was wheelchair bound by age 26.) Today, Leong carries the message of effective patient–physician partnership to a range of consumer, industry, and clinical audiences.
The USBJD Experience
The United States BJD (USBJD) has been one of the most successful of the BJD’s NANs, according to BJD Communications Manager Sara Martin. The USBJD (www.usbjd.org) was initiated in 2002 with a proclamation from President George W. Bush and will run until 2011. Rheumatologists have been actively engaged with their colleagues in orthopedics, physical medicine, patient advocacy, and related disciplines to carry out the BJD mandate. “The USBJD is a big effort,” says Neal S. Birnbaum, MD, director of rheumatology at San Francisco’s California Pacific Medical Center, clinical professor of medicine at the University of California, San Francisco, and past ACR President. He served as ACR’s first representative to USBJD and has been impressed with the level of collegial working relationships within the organization. “We would certainly like to see this cooperation continue between the various disciplines, be it orthopedics, rheumatology, psychiatry, physical therapy, and patient groups, which have traditionally had their own agendas,” he says.
The first hurdle for the USBJD was to secure funding to pay staff so that initiatives could go forward. With the American Association of Orthopedic Surgeons (AAOS) taking the lead, an office was established near AAOS headquarters in Rosemont, Ill. The USBJD has advanced on several parallel tracks, reports its current president, J. Edward Puzas, PhD, the Donald and Mark Clark professor of orthopaedics at the University of Rochester Medical Center in Rochester, N.Y. Some of the more successful include:
- Project 100, an initiative to increase curriculum content for musculoskeletal conditions in 100% of U.S. medical schools. Working with the National Board of Medical Examiners (NBME), the USBJD was able to get them to add a musculoskeletal conditions topic-specific exam. The next phase is the formation of a Council of Musculoskeletal Educators, and its first program is a workshop to share best teaching practices.
- The Young Investigators Initiative is like a “boot camp” for grant writing, says Dr. Puzas. Applicants are paired with mentors, come to twice-yearly intensive weekend seminars, and receive one-on-one coaching and critiques to secure funding for their research projects. Nearly 60 have now completed the program, securing an aggregate total of $14–18 million dollars in grant funding. “Securing grant support for research is a learned skill,” notes Dr. Puzas, “and these young investigators are learning in a couple of weekends a year what it took the rest of us 5–10 years to finally figure out by trial and error!”
- The USBJD’s public education arm has partnered with a number of established patient-advocacy organizations to launch several high-profile initiatives: Protect Your Bones and Joints, aimed at high school students; Fit to a T, in partnership with the National Osteoporosis Foundation, encourages women to get baseline DEXA screening; and Straighten Up America, a flexibility and back pain program. Each year, on October 12–20, the USBJD celebrates National Action Week, which highlights prevention activities.
Dr. Puzas reports that planning has already begun for the BJD Global Network Meeting, which will be held October 21–25, 2009, in Washington, D.C., and will be, he says, “a real advocacy experience,” featuring arranged meetings between international delegates and their embassies, as well as visits to Capitol Hill.
As the BJD rolls towards its finale, its organizers have actively prepared the foundation for the work ahead. For instance, the Department of Orthopaedics at Lund University has been designated as a WHO Collaborating Centre for Evidence-Based Health Care in Musculoskeletal Disorders. “This recognizes the importance our department has in musculoskeletal science, and follows on from the WHO’s support of the Bone and Joint Decade, and the awareness that musculoskeletal diseases are the leading causes of morbidity and disability,” says Dr. Lidgren.
Challenges do remain. Dr. Brooks says, “We haven’t solved all the issues of musculoskeletal disease, and I think it’s important that we ensure that the agenda goes on.”
“There’s a need and a role for the Bone and Joint Decade to continue,” agrees Leong, “especially from a patient advocacy perspective. We need the help of ACR, of AAOS, the Arthritis Foundation, and all organizations who have stepped up to the plate within the decade to move this agenda forward within their respective organizations. This is not just a 10-year initiative—this is a way of thinking.”
- Lidgren, L. The Bone and Joint Decade 2000–2010. Bull World Health Organ. 2003; 81:629.
- The Global Burden of Disease: A comprehensive assessment of mortality and disability from diseases, injuries, and risk factors in 1990 and projected to 2020. Available at: www.who.int/healthinfo/bod1990study/en/print.html. Accessed October 6, 2008.
- WHO World Report on Road Traffic Injuries, 2004. Available at: www.who.int/violence_injury_prevention/publications/road_traffic/world_report/main_messages_en.pdf. Accessed October 6, 2008.