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14 Jun 2024

GOLTC Blog Post

Long-Term Care Financing lessons for Low- and Middle-Income Countries

By the World Health Organization’s Centre for Health Development

Why Long-Term Care financing is matters for Low- and Middle-Income Countries

Long-term care (LTC) systems have received little to no attention in most low- and middle-income countries because population ageing is typically considered a challenge for high-income settings.

But population ageing is also a pressing priority in Low- and Middle-Income Countries (LMICs) where most older people will be living in by 2050. Given the relatively lower levels of health investments in early life, people in LMICs may experience the onset of age-related health problems before the age of 65 years, thus requiring health and LTC services at relatively earlier ages.

Without formal LTC, the costs of providing care shift to families and the health system, which can increase health care costs while offering suboptimal care for older adults. While LTC is traditionally considered the responsibility of the family, the number of informal caregivers has declined with decreases in fertility and family sizes, and increased opportunities for women in the formal workforce. As such, investing in formal LTC systems has become a policy priority in LMICs.

To support countries in designing and implementing LTC systems, the WHO Centre for Health Development (WHO Kobe Centre – WKC) has produced a series of research briefs on Financing LTC: Lessons for Low- and Middle-Income Countries (LMICs) which distil key research findings for policy-makers about LTC policies, systems and and institutions.

Key messages:

  • LTC in LMICs is a key policy priority as a result of the increasing numbers of older people, the onset of age-related health problems at relatively younger ages and the reduced availability of traditionally female informal caregivers.
  • People underestimate their need for LTC and are unable to save enough to cover the costs of needed services as they age.
  • Given the market failure of LTC private insurance, public intervention to meet growing demands is well-justified.
  • Countries that have invested in LTC systems recognize its value to the economy — in reducing the pressure on the acute care health system and providing needed services and financial protection.

How the briefs were developed:

The briefs were developed by summarising existing international research done on ways of financing LTC  Where gaps in evidence existed, background papers were commissioned.  The background papers include literature reviews about gender equity implications of financing LTC, public finance and budgeting for LTC in selected middle- and high-income countries, , a rapid scoping review of important policy and systems initiatives for LTC financing, and a review of issues in LTC financing and implications for LMICs. The findings are presented taking into consideration their potential application in LMICs – where frequently no formal investments have been made in LTC.

This research was informed by WKC previous research quantifying unmet need for care for older persons and it also builds on ongoing work with the European Observatory for Health Systems and Policies in publishing an investment case for LTC in cooperation with academics globally and developing a simulator for LTC workforce projections. The drafts were circulated to the regional and country offices in WHO, and the briefs are currently being translated into Spanish and disseminated in selected countries.

Overview of the briefs:

Brief 1 addresses the issue of what drives the demand for LTC in LMICs. The number of people aged 65 years and older will increase in middle-income countries, where most older people will be living by 2050. At the same time, many people in LMICs will experience the onset of age-related health problems before the age of 65 years. Investments in formal LTC are needed to ensure that older people have access to needed services.

Brief 2 explores options for policy-makers on population coverage of public LTC. Governments that decide to invest in LTC for older adults face policy choices of whether service coverage is universal or selective in covering specific groups or the poor. While universal LTC is assumed to be costly, this depends on the generosity of the benefits package and decisions about its implementation.

Brief 3 covers the thorny issue of how countries finance LTC. Where no LTC system exists, individuals, families and communities cover costs, leading to inequitable access to services and negatively impacts economic growth. This brief contains specific lessons for LMIC settings in using general taxation and insurance programmes for LTC.

Brief 4 discusses the LTC services that can be covered in the benefits package, which may include medical or nursing care, personal care, and assistance and social care. Establishing a LTC benefits package is an ongoing process. It requires continuous assessment of how needs and eligibility are determined, setting thresholds for eligibility, regularly revising benefits and services based on evidence, and linking services to financing and delivery systems that promote quality.

Brief 5 presents evidence about how countries align financing and delivery in LTC. It discusses the balancing act of providing coverage across facilities and in the community for widely varying health and social services for beneficiaries. Many countries are shifting service delivery to communities, but this approach may not be cost saving because delivering care outside of facilities requires investments in quality assurance systems at community level.

Brief 6 covers how countries can ensure financial protection in LTC in recognition that most people are unable to save enough to access needed care as they age. Policies may include targeting those in greatest need, including people with dementia or who have suffered strokes. Countries have also eliminated caps on needed services and capped individual payments to protect people from very high LTC spending.

Brief 7 presents evidence on promoting quality and value in LTC. The COVID-19 pandemic revealed shockingly high rates of preventable mortality among vulnerable older people in LTC settings which could often be attributed to inadequate quality and safety measures in LTC facilities. LMICs can learn from mistakes in more developed settings and invest early in LTC quality and safety to protect vulnerable older people.

Brief 8 presents global evidence financial sustainability in LTC, which requires considering the broader economy-wide impacts of LTC investments across economic, health and social sectors.

 

Full list of authors and affiliations:

This series was written by WKC’s Director, Dr Sarah Barber, jointly with the WHO Departments on Health Governance and Financing, and Ageing, in cooperation with global experts on LTC financing and systems. These include co-authors and reviewers from Dalhousie University (Marilyn MacDonald, Erin Langman, Julie Caruso); European Observatory for Health Systems and Policies (Jon Cylus); Harvard University (Dr Terence Cheng, Winnie Yip); Independent Health and Aged Care Pricing Authority (Kees van Gool); Japan Society for the Promotion of Science (Mariko Kanamori); Kyoto University (Sasaki Noriko, Yuichi Imanaka, Goto Etsu); London School of Economics (Joan Costa-Font); Miami University (Sara McLaughlin); National Center for Geriatrics and Gerontology (Xueying Jin; Tami Saito; Taiji Noguchi; Ayane Komatsu); Organisation for Economic Cooperation and Development (Ricarda Milstein, Luca Lorenzoni); University of Lisbon (Ricardo Jorge Alcobia Granja Rodrigues); University of Santiago (Pablo Villalobos Dintrans); University of Trieste (Ludovico Carrino); WHO Centre for Health Development (Megumi Rosenberg); WHO Communicable and Non-Communicable Diseases Department (Katrin Seeher); WHO Country Office for Indonesia (Feby Oldfisra); WHO Department of Maternal, Newborn, Child and Adolescent Health and Ageing (Jang Hyobum); WHO Regional Office for Europe (Cassandra Simmons); WHO Regional Office for South-East Asia (Tsolmongerel Tsilaajav).

14 Jun 2024

GOLTC Blog Post

23 May 2024

GOLTC Blog Post

From Theory to Practice: Rethinking Health and Social Care Research Ethics in Action

By Chiara De Poli (Care Policy and Evaluation Centre, London School of Economics and Political Science)

In this blog, Chiara De Poli, Research Officer at the Care Policy and Evaluation Centre based at the London School of Economics and Political Science (LSE), outlines key messages from a recent journal article in PLOS ONE on research ethics. She unpacks the origins of research ethics guidance, highlights challenges translating research into practice, and charts out a way forward for collaborative research.

How did research ethics originate

The current research ethics frameworks that oversee how research involving human participants is conducted in the UK and internationally, were developed in response to major scandals and ethical violations in medical research from the 1930s to the 1970s. Regulation and guidance on research ethics were founded on the principles of respect for participant autonomy, justice, beneficence (i.e., to do ‘good’), and non-maleficence (i.e., to do no harm). Initially, they were introduced to regulate biomedical, experimental research only. However, they since have been expanded to cover nonbiomedical, social sciences research, including non-experimental research methods.

The aim of this move was to protect participants in all types of research. Participating in research, even social sciences research, might involve risks (to confidentiality, autonomy) and harm (physical and psychological) that should be avoided. However, applying these standards outside of the original biomedical field has proved difficult.

For example, it is often difficult to fit some social sciences research that is designed to adapt to participants’ demands and changes in context to a standardised research protocol template. Research that uses qualitative or mixed methods, emergent designs (such as participatory research) or collaborative approaches (e.g. co-creation, co-design, co-production), as well as research that involves populations perceived as vulnerable, are examples of this.

Research ethics: policy vs practice

In a recent journal article, we compared how the research ethics system is expected to work according to current research ethics regulation and policies against how it works in practice in the context of collaborative health and social care research.

We analysed the UK research ethics policies which govern research in health and social care to establish how the research ethics system is expected to work. From this analysis, we identified twelve overarching themes, for example, participant protection. We also were able to unpack the related normative principles and operational processes upon which the UK the research ethics system is built. Then, we conducted a scoping review of the literature published between 2010-2020 and complemented it with focus group data collected from active researchers working in this field in England. This helped us establish how the research ethics system operates, in practice, in relation to collaborative health and social care research.

Our review identifies three types of results:

  1. Some themes and principles underpinning research ethics policies are sparsely covered in the literature, possibly because they are not considered core aspect of research ethics. This includes themes around compliance with legislation, integrity, quality and transparency of research.
  2. The literature discusses two themes, labelled as ‘Training on research ethics’ and ‘Research Ethics Committee (REC) membership’, which are not codified in UK policy documents. The UK Policy Framework focuses solely on the competencies and qualifications of research teams. It assumes that REC members are competent to review any type of study, regardless of their actual research expertise. Policies do not address REC membership and their expertise either, which may result in a mismatch between the expertise of REC members and the type of research studies they review. Focus group participants resonated with this, and shared the idea of establishing RECs with specialist interest in specific research approaches, topics, or populations, as a possible solution to this issue.
  3. We found that other themes, such as the working of RECs and the research protocol, have received substantial attention in the literature and fundamentally resonated among focus group participants. Results across themes, principles, and processes, were highly coherent and seem to converge around issues in how the research ethics system deals with collaborative research. This seems to show that the positivist approach to research ethics is not suitable for reviewing research that is not positivist in nature.

Overall, our work does not question the need for regulation and ethics oversight of research, but we believe that the current rule-based and procedural approach to ethics needs to be re-evaluated.

Translating ideas about ethics into practice

Our findings have led us to endorse processes of ‘micro ethics’, ‘situated ethics’, ‘relational ethics’ and practices of ‘ethical mindfulness’ and reflexivity on the part of individual researchers. All of these approaches involve effort by the researchers to listen, attune and align to the participants, and to tend to the relationships with them as the research unfolds. We also offer some suggestions on how to translate these ideas into practice. Some of these include creating RECs with specialist methodological expertise, creating opportunities for research ethics mentoring throughout a research study, and ensuring that research ethics documents are genuinely accessible (i.e., shorter and simpler) to participants. The findings from this work contribute to an agenda for improving research ethics for collaborative research in the health and social care field, and beyond.

Further reading on research ethics for health and social care research

De Poli, C., & Oyebode, J. (2023). Research ethics and collaborative research in health and social care: Analysis of UK research ethics policies, scoping review of the literature, and focus group study. PLOS ONE, 18(12), e0296223. https://doi.org/10.1371/journal.pone.0296223

DEEP. (2020). The DEEP-Ethics Gold Standards for Dementia Research. DEEP. https://www.dementiavoices.org.uk/wp-content/uploads/2020/07/The-DEEP-Ethics-Gold-Standards-for-Dementia-Research.pdf

Fletcher, J. R. (2021). Unethical governance: capacity legislation and the exclusion of people diagnosed with dementias from research. Research Ethics, 17(3), 298–308. https://doi.org/10.1177/1747016120982023

Goodyear-Smith, F., Jackson, C., & Greenhalgh, T. (2015). Co-design and implementation research: challenges and solutions for ethics committees. In BMC Medical Ethics (Vol. 16, Issue 1, p. 78). BioMed Central. https://doi.org/10.1186/s12910-015-0072-2

Opsal, T., Wolgemuth, J., Cross, J., Kaanta, T., Dickmann, E., Colomer, S., & Erdil-Moody, Z. (2016). “There are no known benefits.”: Considering the risk/benefit ratio of qualitative research. Qualitative Health Research, 26(8), 1137–1150. https://doi.org/10.1177/1049732315580109

 

 

23 May 2024

GOLTC Blog Post