June 11, 2018| Press Releases
On June 11, 2018, leaders from the National Osteoporosis Foundation (NOF), International Osteoporosis Foundation (IOF), and Amgen’s Bone Health and Advocacy Relations teams convened in London, England at the Royal Academy of Medicine. The purpose of the meeting was to develop a concrete plan for a meaningful collaboration between the two organizations. Back row: Cheryl Hostniak (Amgen), Andreas Grauer (Amgen), Christopher Sherwood (Amgen), Cyrus Cooper (IOF), Nick Harvey (IOF), Philippe Halbout (IOF), Tom Croce (Amgen) Front row: Susan Greenspan (NOF), Andrea Singer (NOF), Liz Thompson (NOF), Bonnie Tucker (Amgen) Also attending but absent in the photo: Ken Saag (NOF)
After an initial set of introductions, the group first mapped and then prioritized the unmet needs in the osteoporosis field. For two top-priority unmet needs, the group developed an action plan on how they would collaborate to address the needs.
The group consisted both of researchers who have been in the osteoporosis field for decades nd know each other well, and advocates and others who are newer to the field. In addition to the basic introductions, participants were asked to name one thing each one offers to the collaboration between the IOF and the NOF. From the expressions of enthusiasm for the work together, several common resources were identified:
The capacity to develop engaged patient advocacy—listening to, motivating, and activating patients. Advocacy by patients, not just for patients.
• Global reach—to both listen to and communicate with patients, health care professionals, and researchers.
• The ability to bring people together and to generate consensus and collaboration across disciplines and geographies.
• The knowledge and experience base needed to provide a ‘reality check’ on any ideas generated.
• Deep commitments to change the dynamic of the disease, including bringing back positive messages to the bone health field.
Unmet Needs in Osteoporosis
The group next brainstormed a wide range of unmet needs in osteoporosis, spanning patients and the public, clinical practice, and health systems and policy.
Patients and the Public
• Lack of awareness and misperceptions. There is a general lack of awareness about osteoporosis and its risks. The risks of fracture and its consequences are underestimated, while the risks of treatment complications, including in the jaw and atypical fractures of the femur, are overestimated by the public. The risks for younger women are underestimated. Further, there is a perception that fracture is a
normal part of aging, rather than a preventable condition.
• Lack of advocacy. Advocacy by (rather than for) patients is lacking. Moreover, there is little sense of community or public identity among people with the disease or sense of importance of osteoporosis.
• Lack of provider communication. Communication between health care providers and patients about osteoporosis and its risks and treatments is lacking.
• Public skepticism. The public exhibits growing skepticism about science and mistrust of experts.
• Inadequate evidence base and inconsistent guidelines. Health care providers rely on practice guidelines from their professional societies and, for some, the published evidence base. Working from a common (and inadequate) evidence base, professional societies have developed inconsistent practice guidelines.
• Lack of awareness and misperceptions. Like with the public, health care providers have limited awareness of osteoporosis and misperceptions about its risks. They, too, underestimate the risk of fragility fractures and overestimate the risk of treatment and communicate those misperceptions to their patients.
• Uncertainty about correct practice. Physicians are unsure about correct practice and lack confidence about treatment regimens. Inconsistent practice guidelines contribute to that uncertainty. There is particular confusion about cessation of
therapy/drug holidays. Specifically, suggestions in guidelines to evaluate the need to stop therapy for bisphosphonates after five years have been interpreted as a directive to stop the therapy. Further, there is a lack of clarity about how, whether, and when to resume therapy. Moreover, some physicians over intepret the guidance on bisphosphonates to include denosumab, which depends on continued therapy to remain effective.
• Misaligned incentives and inadequate tools in busy practices. Most primary care/general practice offices are extremely busy with very little time per consultation.
As a result, time to speak with patients about osteoporosis is often preempted by other, more pressing health conditions. Moreover, physicians lack effective, concise communication tools to inform patients about the disease. As a result there is not consistent follow-up to ensure adherence to treatment regimens.
• Fragmented practice means no one is responsible for primary or secondary prevention of fractures. The fragmented nature of physician practices around the world prevents the kind of coordination that is possible in multi-disciplinary chronic disease management programs. Even though fracture liaison services (FLS) exist, they are not widely implemented. The orthopedic surgeons who treat hip fractures do not routinely refer patients for evaluation or mitigation of risk of secondary fracture.
Inadequate physician/provider training about osteoporosis.
Lack of trust across different professional constituencies.
Poor quality of online data and data overload for health care professionals.
Health Systems and Policy
• Inadequate funding. In an era of increasing health costs and tight government/payer budgets, there is inadequate funding for many services essential to osteoporosis care, including primary screening, screening technologies in lower-income countries, and secondary screening and prevention, including fracture liaison services.
• Misaligned and fragmented incentives. Payers and policy makers, both public and private, tend to take a short-term and fragmented view of health care costs and benefits. They face few, if any, penalties for poor system performance. Medical and pharmaceutical budgets are often managed separately, rendering it difficult to make the case for offsetting medical costs by increasing drug costs. For those countries that do health-economic analysis, osteoporosis treatments are typically near the cutoff point of what is considered cost-effective, especially as many of the costs of the burden of the disease are borne privately and not readily quantified. The experts who could shed light on these costs are not always consulted because policy makers fear conflict of interest on their part.
• Aging population in industrial countries. The aging population in industrial countries ensures that osteoporosis will gain in importance and impact.
• Competition for attention. As with the attention of the public and health care providers, policy makers and payers have competing demands on their attention from other health conditions that are either larger in impact, more emergent, or better represented by advocates.
Prioritization of Unmet Needs
Participants developed a set of criteria to evaluate the unmet needs in order to identify those that could be candidates for collaboration. The criteria included:
• Results can be realized in one to three years
• The problem is tractable
• There is sufficient global similarity to make it relevant for both organizations
• It can be framed as a focused question with a well-defined outcome and deliverable
• There is the potential for innovation—for the collaboration to do something new
• NOF and IOF are uniquely suited to do the work
Seven initiatives were identified out of the unmet needs and the criteria were applied to those initiatives. The top two were developed into collaborative initiatives. In descending order of participant interest, they are:
• Develop clear communication tools about osteoporosis for primary care providers and other trusted sources to give to patients.
• Develop patient-led communication about risks and benefits of osteoporosis and its treatments.
• Develop online patient communities to share information about their experiences with the disease and its treatment, as well as their priorities.
• Develop training programs that will facilitate recruiting the next generation of providers and researchers to the field.
• Develop care pathways and tools that empower patients to direct their own care.
• Conduct a general public awareness campaign about osteoporosis screening.
• Develop funding sources for fracture liaison services.
The group developed action plans for the top two initiatives: 1) developing clear communication tools about osteoporosis for primary care providers and other trusted sources to communicate with patients and 2) developing a patient-led communication tool about the risk of osteoporosis and its treatments.
1) Develop clear communication tools for PCPs
• Objective: develop a simple, modular, clear tool for primary care providers and others to communicate with patients at different points in their experience with osteoporosis.
• The tool should include messages about:
– Risk assessment—who should be screened, when, how
– Treatment options—at all stages of disease, including prevention, treatment to prevent primary fracture, and treatment to prevent secondary fracture
– Balances of risks and benefits of different treatments/approaches, including doing nothing
– Simple presentation of relevant statistics
– How to think about osteoporosis as a chronic disease
– Checklists for patients to identify what they know and don’t know about bone health
• Factors that will contribute to the success of this tool include:
– Making it available at the point of care in a variety of versions and formats useful in different practice settings
– Making it so easy that PCPs want to use it, even in a short office visit
– Connecting the information to something important for the patient
• Tasks and actions:
– NOF and IOF form a joint task force to develop the content
– The task force develops draft content—designed to be “radically simple”
– The task force conducts a meta-analysis of existing practice guidelines to facilitate buy-in of the communication tool
– The task force market-tests the draft content with an international selection of
influential PCPs and a selection of patients. This is conducted as community based, participatory research so the participants can later be enlisted to assist with dissemination
– The task force finalizes the content and plans for dissemination in different, relevant formats
– NOF and IOF disseminate the tool
2) Develop a patient-led communication tool about the risk of osteoporosis and its treatments
• Objective: develop a patient-led tool to communicate to patients about the risk of
osteoporosis and the risks and benefits of its treatment.
• The tool should be developed in a way that:
– Incorporates patient voices in a systematic, academically-validated fashion
– Provides communication that will improve patient decision-making about their focus on the disease, their treatment path, and their adherence to treatment
• Factors that will contribute the success of this tool include:
– It should be relevant internationally
– Patients should be able to use the tool to advocate for themselves
– The method to develop to tool should be innovative
– It should incorporate patient voices at all levels and throughout the process
• Tasks and actions:
– IOF and NOF form a joint task force to develop the scope and purpose of the Tool. As of this writing, it is expected leadership will have an initial phone call and meet in person in late September for a second working meeting.
– The task force reviews existing tools and approaches and either chooses one or develops a new tool
– The task force decides on an approach to tool development, for example, rapid prototyping (prototype, assess, revise, reassess)
– In parallel, the task force develops a white paper/academic paper reviewing the literature and establishing the charter/presence of this effort
– The task force develops the tool. It then disseminates the tool in a format
that allows its effectiveness to be measured systematically. It conducts market research on the response to the tool.
– Once validated, NOF and IOF disseminate the tool.
About the National Osteoporosis Foundation
Established in 1984, the National Osteoporosis Foundation is the nation’s leading health organization dedicated to preventing osteoporosis and broken bones, promoting strong bones for life and reducing human suffering through programs of awareness, education, advocacy and research. For more information on the National Osteoporosis Foundation, visit www.nof.org.