Appendix C

Concept Notes

FUNCTIONING AND THE REALIZATION OF HEALTHY LONGEVITY THROUGH REHABILITATION

Concept Note, Panel 1

Context

The aim of this Workshop is to facilitate a discussion of the World Health Organization’s (WHO’s) concept of functioning as introduced in its International Classification of Functioning, Disability and Health (ICF), and to explore its role in rethinking the operationalization of health and its application to healthy longevity and the increasing relevance of rehabilitation as a key health strategy for the twenty-first century.

In the ICF, functioning includes the functions and structures of the body that constitute the intrinsic health capacity of a person as well as the actual performance of simple and complex activities in interaction with the person’s physical and social environment. Conceptually, functioning comprises the domains of both biological health and lived health, where lived health is fully contextualized as an outcome of interactions between a person’s intrinsic health capacity and features of their environment.

Across the lifespan, all of us may experience pain, anxiety, fatigue and weakness, tight joints, skin sores, and other sensory, mobility, and cognitive impairments. When these impairments affect our lives—when we cannot climb stairs painlessly, walk as far as we used to, clean or dress ourselves, read a book, make and keep friends, do all the homework we need to do,

or perform our jobs—these concrete, real-life difficulties shape our lived experience of health. And this lived experience is what matters to us about our health; it’s why we seek out health care in the first place. When we do not experience these difficulties, we are well advised to invest in health promotion activities to make us more resilient in functioning. In short, the notion of functioning creates a more meaningful operationalization of what health means to us.

WHO’s concept of human functioning constitutes a new understanding and conceptualization of health with wide-ranging consequences, for aging and rehabilitation research, practice, and policy.

Functioning constitutes a third indicator of health, augmenting the traditional indicators of mortality and morbidity. As the third indicator, functioning completes our intuitive sense of why health matters: avoiding premature mortality and controlling morbidity are clearly important to us, both individually and as members of society at large. But there is a third dimension that is missing to this picture, our everyday functioning and lived experience of our state of health. This is most clear in the case of population aging. As improved health care and other social improvements continue to add more years to our lives, it becomes equally important to add more life to our years.

As well as population aging, the increased prevalence of noncommunicable diseases—whose impact is primarily assessed in terms of changes in functioning—is a substantial public health concern, warranting increased investment in rehabilitation which aims to optimize functioning. These trends point to the need to prepare our health care systems by reorienting their focus to optimizing functioning through strengthening rehabilitation.

The operationalization of health as functioning helps to explain the contribution the health care system can make to individual well-being and societal welfare, as well as providing a more robust foundation for our understanding of disability, as a decrement of functioning, and how we assess disability for health and social purposes.

Objective of the Panel

The objective of this panel is to prepare the ground for the Workshop by scrutinizing WHO’s notion of functioning. The focus is conceptual and includes

1. The role of functioning as the third indicator of health in the operationalization of health for aging and rehabilitation research, practice, and policy.
2. Functioning as a robust and sound basis for the healthy longevity agenda, especially in ensuring that rehabilitation—the health strat

egy whose primary aim is to optimize functioning—can contribute to these goals.

3. The potential of functioning to capture what the health care system can contribute to individual well-being and societal welfare, in light of population aging.
4. The role of functioning for reorienting the notion of disability, especially for standardized, transparent, and fair assessment for health and social benefits.

Questions for Discussion

1. What is the role of functioning in operationalizing health for measurement, the health sciences, practice, and policy—how can functioning as the third indicator of health be concretely implemented?
2. How can functioning in practice provide a robust and sound basis for the healthy longevity agenda, especially in ensuring that rehabilitation—the health strategy whose primary aim is to optimize functioning—can contribute to those goals?
3. How can functioning directly contribute to the explanation of the health care system’s role in individual well-being and societal welfare?
4. How can functioning reorient our understanding of disability, especially for to achieve standardized, transparent and fair assessment of disability for health and social benefits?

References

—Drafted by Jerome Bickenbach

FUNCTIONING AND THE INVESTMENT CASE FOR THE ROLE OF REHABILITATION IN HEALTHY LONGEVITY

Concept Note, Panel 2

Context

This panel will show how expanding the focus on human functioning can bring enormous economic gains both to individuals and society at large. The focus on functioning emphasizes that people care about their health not just because of the stock of health they can accumulate but because of what they can do when healthy, that is, their functioning. In general, people with a wider range and more robust functioning are more independent and more able to actively participate in society, which has important implications for the financial stability of families, the economy, and health and social systems.

People are living longer—the product of the great success of medicine and technology—but they are also more likely to face chronic health conditions that limit their everyday lives. Increasing prevalence of chronic health conditions means more disability, which in turn creates economic challenges both for the individual and the rest of society. Not only do people facing disability require more care, support, and accommodation, but many must also limit their labor market participation. As these epidemiological and social trends continue, the increasing dependency and accommodation levels will bring significant financial constraints for individuals, their families, and the economy in general, with important effects on how our health and social systems are organized.

While expanding services and insurance coverage may be the first solution to cope with the changing needs of the population, the increasing health and social care costs will constrain the growth possibilities of societies. Therefore, a more proactive solution will be to fundamentally shift the policy focus from a limited one of treating health conditions to a more comprehensive measure of functioning. If successful, we will achieve a more productive and effective societal structure, more financially stable individuals and families, more dynamic economies, and more sustainable health and social systems.

Objective of the Panel

This panel discusses how recentering the focus of health and social systems to people’s functioning can bring significant economic gains to society. This panel will take a societal perspective and will consider whether

1. Targeting functioning translates into more active and participating citizens in the labor market, and the potential economic gains: This shift directly affects the labor supply, which is limited in industrialized economies.
2. Targeting functioning translates into a more independent population that relies less on the support, care, and accommodation from others: This shift will have important implications for the financial situation of individuals and their families.
3. Targeting functioning will result in healthier and more active people and contain the increasing health and social care expenditure: This shift will impact health and social cost and the sustainability of health and social systems in the long term.

Questions for Discussion

1. Demographic dynamics put disability at the center of public health. Therefore, how can we show health and social systems that what matters for society is functioning and not only health?
2. One of the main challenges for health and social systems is coping with the increasing needs of care in the population. Currently, long-term care is extremely expensive and available to only a small part of the population. How can we shift the focus of health and social systems toward functioning and not only expanding care services?
3. While health is important, what matters at the social level is that people be independent. Therefore, how can we incentivize the active measurement of other relevant outcomes, such as working status, in health and social care systems?
4. How can we expand the focus toward a more comprehensive understanding of human health in terms of functioning within the existing structure of health and social systems? Do health and social services need to adapt their information systems and their reimbursement and other financial arrangements in order to include indicators that allow us to measure functioning?

References

Chetty, R, M. Stepner, S. Abraham, S. Lin, B. Scuderi, N. Turner, et al. 2016. The association between income and life expectancy in the United States, 2001–2014. JAMA 315(16):1750–1766.

Colombo, F. 2023. Human functioning: Realizing the value of health. Front Sci 1.

Directorate-General for Employment, Social Affairs and Inclusion (European Commission). 2021. Long-term care report: Trends, challenges and opportunities in an ageing society. Luxembourg: Publications Office of the European Union.

Grosse, S. D., J. Pike, R. Soelaeman, and J. M. Tilford. 2019. Quantifying family spillover effects in economic evaluations: Measurement and valuation of informal care time. Pharmacoeconomics 37(4):461–473.

Halla, M., and M. Zweimüller. 2013. The effect of health on earnings: Quasi-experimental evidence from commuting accidents. Labour Econ 24:23–38.

Iezzoni, L. I., S. G. Kurtz, and S. R. Rao. 2014. Trends in U.S. adult chronic disability rates over time. Disabil Health J 7(4):402–412.

Mathers, C. D., G. A. Stevens, T. Boerma, R. A. White, and M. I. Tobias. 2015. Causes of international increases in older age life expectancy. Lancet 385(9967):540–548.

Mudrazija S. 2019. Work-related opportunity costs of providing unpaid family care in 2013 and 2050. Health Aff (Millwood) 38(6):1003–1010.

Muurinen, J. M. 1986. The economics of informal care: Labor market effects in the National Hospice Study. Med Care 24(11):1007–1017.

Peng, W., S. Chen, X. Chen, Y. Ma, T. Wang, X. Sun, et al. 2023. Trends in major noncommunicable diseases and related risk factors in China, 2002–2019: An analysis of nationally representative survey data. Lancet Reg Health West Pac 43:100809.

—Drafted by Diana Pacheco

THE FOUNDATION FOR IMPROVING REHABILITATION SERVICE DELIVERY AND CARE ACROSS THE LIFE COURSE: PERSON-CENTERED CARE, INTEGRATED CARE PRINCIPLES AND THE LIVED EXPERIENCE OF HEALTH

Concept Note, Panel 3

Context

The overall aim of this workshop is to facilitate a discussion on how rehabilitation services, focusing on effective, accessible, integrated and person-centered care, can contribute to achieving the goals of the UN Decade of Healthy Ageing. As the main goal of rehabilitation is to optimize functioning, the concept of functioning provides the basis for achieving this goal and fully realizing the healthy longevity agenda.

Rehabilitation is recognized by WHO as one of its five health strategies in the Astana Declaration, in which member states committed to “meet the health needs of all people across the life course through comprehensive preventive, promotive, curative, rehabilitative and palliative care.” Due to its importance in a world increasingly characterized by aging societ-

ies and epidemic noncommunicable diseases, in 2017 WHO launched a specific agenda—WHO Rehabilitation 2030—calling on member states to strengthen health systems to provide rehabilitation to all people in need, including people with health conditions, the aging population and people with disabilities. Finally, access to rehabilitation is a human rights issue. The Convention on the Rights of Persons with Disabilities devotes Article 26 to rehabilitation, stressing the need to strengthen services and programs and access to assistive technology.

The global need for rehabilitation is profound. In 2019 a landmark article in The Lancet using data from the Global Burden of Disease showed that 2.41 billion people have health conditions that would benefit from rehabilitation. This represents one in three people worldwide, many of whom are older adults. The main health conditions associated with the needs of people over 65 are musculoskeletal disorders, neurological disorders, sensory disorders (hearing, vision), and chronic respiratory diseases. A Resolution on Rehabilitation was adopted by the World Health Assembly in 2023, emphasizing the need to strengthen rehabilitation into health systems worldwide.

The importance of giving rehabilitation a more prominent role in healthy longevity agendas has been well justified, especially to improve health and social support services and assistive technologies for the aging population. At the European level, scoping reviews and online consultations currently being performed under the auspices of WHO EURO will lead to an expert consultation on priority setting for strengthening rehabilitation services for healthy aging in Europe and a WHO EURO Regional Summit for National Policy Experts on Healthy Ageing in Lisbon in October 2023 focused on the United Nations’ goals as part of the Decade on Healthy Ageing. All these initiatives to strengthen rehabilitation, however, depend on concerted efforts to ensure changes and reforms to health systems to support rehabilitation and international aging agendas.

Objective of the Panel

The objective of this panel is to interrogate health systems in light of international healthy aging agendas and in particular the essential role that rehabilitation, as the health strategy whose aim is to optimize functioning, plays in healthy longevity and aging. The panel focuses on

1. the role of rehabilitation service delivery and care across the life course;
2. rehabilitation as a key WHO health strategy to achieve healthy aging;

3. the potential of health systems reforms to ensure that rehabilitation contributes to individual well-being and societal welfare, in light of population aging;
4. rehabilitation as a health strategy to all people in need, including people with health conditions, the aging population and people with disabilities.

Questions for Discussion

1. What is the role of rehabilitation service delivery and care across the life course for the health sciences, practice, and policy? How can rehabilitation as a health strategy be concretely strengthened in health systems?
2. How can rehabilitation as a key health strategy contribute to achieve a healthy longevity of populations worldwide?
3. What is the potential of rehabilitation to contribute to individual well-being and societal welfare in light of population aging, and how this should be communicated to policymakers?
4. How can we reorient our understanding of rehabilitation from a service exclusive to specific groups to a health strategy relevant to all people in need, including people with health conditions, the aging population, and people with disabilities?

References

Welch, V., C. M. Mathew, P. Babelmorad, Y. Li, E. T. Ghogomu, J. Borg, et al. 2021. Health, social care and technological interventions to improve functional ability of older adults living at home: An evidence and gap map. Campbell Syst Rev 17(3):e1175.

World Health Organization. 2023. Landmark resolution on strengthening rehabilitation in health systems. https://www.who.int/news/item/27-05-2023-landmark-resolution-on-strengthening-rehabilitation-in-health-systems (accessed May 10, 2024).

World Health Organizatino. 2023. Regional summit on policy innovation for healthy ageing in the WHO European region. https://www.who.int/europe/news-room/events/item/2023/10/10/default-calendar/regional-summit-on-policy-innovation-for-healthy-ageing-in-the-who-european-region (accessed May 10, 2024).

World Health Organization. 2019. Rehabilitation in health systems: Guide for action. https://www.who.int/publications/i/item/9789241515986 (accessed May 10, 2024).

—Drafted by Carla Sabariego

FUNCTIONING AS THE KEY TO A COMPREHENSIVE 360-DEGREE LIFE COURSE FOUNDATION FOR HEALTHY LONGEVITY RESEARCH

Concept Note, Panel 4

Context

As functioning is a multifaceted concept, when used as the foundation for research into the lived experience of health, it is a challenge to capture in study design its complexity integrating different methodologies, measures, and perspectives that represent the biomedical, psychological, and social dimensions of functioning. This is not merely a matter of collaboration across disciplines, but also collecting comparable functioning information. While the International Classification of Functioning, Disability and Health (ICF) provides the framework for describing and organizing comparable functioning information, considerable work remains to develop standardized assessment and statistical analysis of functioning information, including harmonization across different data sources, clinical, cohort and population studies, and administrative data. Particularly challenging, given that functioning changes over time and across different environmental contexts, is assessing change longitudinally. This is especially important for aging studies when life events and the aging process itself influence trajectories of functioning.

Rehabilitation involves diverse populations with different health conditions, impairments, and health and health-related needs. This heterogeneity can make it difficult to generalize findings and develop universally applicable interventions. Because functioning is influenced by diverse contextual factors—from climate to interpersonal relations and attitudes to social and

economic structures—researchers are challenged to ensure that findings are applicable across diverse populations and settings. Statistical analysis of heterogeneous samples requires large sample sizes, which are often difficult to achieve in rehabilitation settings.

Finally, as with all health research that aims to capture the full experience of health, functioning research shows that a 360-degree perspective faces considerable practical challenges. Investigating rehabilitation interventions can be resource-intensive, and economic constraints may limit the scope and scale of these studies, which in turn affects researchers’ ability to address all aspects of functioning. It is also challenging to ensure that functioning research addresses issues that are aligned with individuals’ priorities and values and to achieve meaningful patient participation in the research process. Disparities in access to rehabilitation services, particularly in underserved communities or low-income populations, pose challenges for study recruitment, may introduce selection bias, and compromise the external validity of studies. More generally, rehabilitation and healthy longevity research is underfunded, making it difficult to conduct high-quality research and to recruit and retain talented researchers. There is, as well, a need to train health scientists in functioning and to build academic capacity for a new generation of health researchers. Finally, functioning research results must be translated into practice and inform policy, which will require new strategies of implementation.

Objective of the Panel

The notion of functioning opens up the possibility for innovative research in health sciences, and rehabilitation and healthy longevity specifically, but capturing the full 360-degree view of the lived experience of health requires a range of scientific perspectives, including the biomedical, clinical, epidemiological, psychosocial, and socio-humanistic. The goals of this workshop are to explore this potential and opportunities of functioning-based health research and to identify key challenges in research on functioning for rehabilitation and healthy longevity.

Questions for Discussion

1. Does reorienting health sciences around the concept of functioning augment our understanding of the lived experience of health, and if so in which ways?
2. How can functioning as a framework for 360-degree research on the lived experience of health conditions be used fully in service of the scientific advancement of rehabilitation and the healthy longevity agenda?

3. How can functioning within rehabilitation and healthy longevity research have maximum impact and recognition, given the need to emphasize multidisciplinary collaboration rather than prioritizing specific scientific disciplines or methodological approaches?
4. Do we need tailored scientific research careers in rehabilitation and healthy longevity to address challenges and enhance efforts to study functioning? What would ideal research curriculum look like in detail?
5. Are there unique and uniquely challenging issues in bridging the gap between functioning-based rehabilitation and healthy longevity research findings and practice and policy? Is novel translational research required to ensure that evidence-based interventions and policies are effectively implemented?

References

—Drafted by Armin Gemperli

ADVOCACY FOR HEALTH AND SOCIAL POLICY IN SUPPORT OF HEALTHY LONGEVITY: FUNCTIONING AS THE THIRD INDICATOR OF HEALTH

Concept Note, Panel 5

Context

This panel will highlight the crucial role of advocacy in bringing awareness of the importance of the World Health Organization’s concept of functioning from the International Classification of Functioning, Disability, and Health (ICF) as a fundamental pillar in reimagining health operationalization, and specifically the potential for rehabilitation being the health strategy of the twenty-first century.

Advocacy, at its heart, is the act of promoting and championing a particular cause or policy. In the realm of health and health care, advocacy

takes on a pivotal role, serving as the bridge between innovative concepts and their acceptance in broader society.

The revolutionary concept of functioning in particular, while groundbreaking, is not immediately grasped or universally understood. The depth of its meaning, interlinking biological health factors with lived experiences, often clashes with prevalent, more monolithic interpretations of health. Addressing these misconceptions and the variety of interpretations requires targeted, informed advocacy.

Functioning melds the biological dimension of health with real-world lived experiences. These experiences, reflecting the dynamic between individual health states and their environment, shape our perceptions and understanding of health and what it means for us in our daily lives. Yet, this very depth and intricacy make it susceptible to misinterpretation or oversimplification. For functioning to truly reshape how we perceive health and rehabilitation, especially in the context of healthy longevity, strong advocacy initiatives are required to elucidate its nuances and significance.

Introducing functioning as the third health indicator, augmenting traditional indicators of mortality and morbidity, demands a shift in societal perspective, especially as the world contends with challenges like an aging population and the rise of noncommunicable diseases. These challenges underscore the need not just for quantitative longevity but also ensuring quality and purpose in those added years. Advocacy, then, becomes the key to stressing this nuance and urging the health care system to reorient its priorities toward optimizing functioning and recognizing the central role of rehabilitation.

In this light, the concept of functioning not only transforms our understanding of health but also refines our perspective on disability, framing it as a decrement in functioning. However, for this concept to take root, and to influence policies and public opinion, focused advocacy efforts are essential.

This panel seeks to emphasize the paramount importance of advocacy in solidifying the place of functioning within our health care discourse. It will explore the challenges and strategies in promoting this nuanced concept, and how, through informed and evidence-based advocacy, we can pave the way for a more comprehensive and effective approach to rehabilitation.

Objective of the Panel

The objective of this panel is to highlight the vital role of advocacy in advancing the understanding and integration of the World Health Organization’s functioning concept within the broader health care and societal

discourse, thereby paving the way for a central role of rehabilitation in health systems.

1. Awareness and clarification: to illuminate the depth and intricacies of the functioning concept, identifying what is difficult to communicate about it.
2. Strategizing advocacy: to discuss effective advocacy strategies that can resonate with diverse stakeholders—from health care professionals and policymakers to the general public.
3. Case studies and challenges: to share instances where advocacy for functioning faced hurdles, providing insights on overcoming these barriers and the lessons learned from these experiences.
4. Interdisciplinary collaboration: to underscore the importance of multidisciplinary collaboration in advocacy, bringing together voices from health care, policy, academia, and patient advocacy to create a unified and compelling narrative.
5. Futurescape: to envision the potential impact on health care and society should the advocacy for functioning succeed, emphasizing the transformations in policy, practice, and public perception.

Questions for Discussion

1. What are the most common misconceptions and challenges in communicating and speaking about functioning, and how can we more effectively explain its depth and nuances to varied audiences?
2. What best practices or innovative approaches can be adopted to ensure that advocacy strategies for the concept of functioning to resonate not only with medical professionals but also with policymakers and the general public?
3. How can we foster a more collaborative advocacy approach that integrates perspectives from health care, policy, academia, and patient advocacy to present a cohesive and impactful message about the concept of functioning?
4. Looking ahead, if our advocacy efforts concerning the concept of functioning are successful, what transformative changes can we anticipate in health care policies, practices, and public perceptions in the coming years?

References

American Public Health Association. 1999. APHA legislative advocacy handbook: A guide for effective public health advocacy. Washington, DC: APHA.

Chapman, S. 2001. Advocacy in public health: Roles and challenges. Int J Epidemiol 30(6):1226–1232.

Daly, J. A. 2012. Advocacy: Championing ideas and influencing others. New Haven: Yale University Press.

Franklin, H. 2001. Advocating for the public’s health: A training manual. Association of North Carolina Boards of Health and NCPH.

World Health Organization. 1992. Advocacy strategies for health and development: Development communication in action. Geneva: World Health Organization.

World Health Organization. 2006. Stop the global epidemic of chronic disease: A practical guide to successful advocacy. Geneva: World Health Organization.

—Drafted by Sara Rubinelli