Earth Dreams: Reimagining ARPA for Health of People, Places and Planet

Bold new approaches are urgently needed to overcome global health challenges. The proposed Advanced Research Projects Agency for Health (ARPA-H) is intended to provide rapid health breakthroughs. While new technologies for earlier disease detection and more effective treatment are critical, we urge equal attention be given to the wider (physical, emotional, social, political, and economic) environmental ecosystems driving the non-communicable disease (NCD) crisis in the first place. This requires an integrated, cross-sectoral vision that spans the interwoven connections affecting health across the scales of people, places, and planet. This wider “exposome” perspective considers biopsychosocial factors that promote resilience and reduce vulnerabilities of individuals and communities over time—the many variables driving health disparities. Since life course health is strongly determined by early life environments, early interventions should be prioritized as a matter of effectiveness and social justice. Here, we explore the origins of the Advanced Research Project Agency and point to its potential to build integrated solutions, with wisdom and ethical value systems as a compass. Since the planned ARPA-H is anticipated to spawn international collaborations, the imagined concept is of relevance to a broad audience of researchers. With appropriate input, the quest for health equity through personalized, precision medicine while deconstructing unacceptable structural inequities may be accelerated.

Dependency, Mortality, Invisibility: Linking Childhood Disability with Life Course Health Outcomes

People who experienced disability in childhood are living longer. It is not clear if longer lives indicate better health and less dependency, or if longer life is accompanied by increased dependency. We addressed that question by studying the joint dynamics of mortality and dependency. This population is “invisible” in most national surveys, which do not ask about childhood disability. We evaluated special education history as an indicator of childhood disability, and used that indicator to estimate dependency and life expectancy throughout adult life. Data: Panel Study of Income Dynamics and the Health and Retirement Study (n=20,563). Activities of daily living (ADLs), instrumental ADLs, and cognition defined five functioning levels including dependency and death. Multinomial logistic Markov models estimated probabilities for transitioning among the levels, with or without a history of childhood disability, adjusted for demographics. We used the probabilities in microsimulations, creating large populations of completed lives, identifying dependency at each age for each individual. Analysis showed special education history was a valid indicator of childhood disability; 13% had such history. With parent education less than high school, remaining life at age 20 was 46.0 years for people with that history, 58.3 for others; corresponding results with parent’s bachelor’s degree: 48.3 and 60.7 (p<0.05). Corresponding population percentages dependent 5+ years were: 15.2% and 3.8%, 13.1% and 3.8% (all p<0.05). Special education history can indicate childhood disability. People with that history had significantly more dependency than others, and shorter lives. Accommodations and interventions can improve their health and functioning.

Cohort Profile Update: The HUNT Study, Norway

In the HUNT Study, all residents aged ≥20 years in the Nord-Trøndelag region, Norway have been invited to repeated surveys since 1984-86. The study data may be linked to local and national health registries. The HUNT4 survey in 2017-19 included 56 042 participants in Nord-Trøndelag and 107 711 participants in the neighboring Sør-Trøndelag region. The HUNT4 data enable more long-term follow-up, studies of life-course health trajectories, and within-family studies. New measures include body composition analysis using bioelectrical impedance; a one-week accelerometer recording; physical and cognitive testing in older adults; measurements of hemoglobin and blood cell counts, HbA1c and phosphatidylethanol; and genotyping. Researchers can apply for HUNT data access from HUNT Research Centre if they have obtained project approval from the Regional Committee for Medical and Health Research Ethics, see www.ntnu.edu/hunt/data.

The role of family adaptation in the transition to adulthood for youth with medical complexity: a qualitative case study protocol

Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more fragmented and unfamiliar adult services. Previous studies report that families feel abandoned, overwhelmed, and unsupported during transition. In order to provide better support to families, we need to understand how families currently manage transition, what supports they need most, and how key factors influence their experiences. The aim of this study is to understand how families of youth with medical complexity adapt to the youth’s transition to adulthood and transfer to adult health care, social, and education services, and to explain how contextual factors interact to influence this process. Methods Informed by the Life Course Health Development framework, this study will use a qualitative explanatory case study design. The sample will include 10–15 families (1–3 participants per family) of youth with medical complexity (aged 16–30 years) who have lived experience with the youth’s transition to adulthood and transfer to adult services. Data sources will include semi-structured interviews and resources participants identified as supporting the youth’s transition. Reflexive thematic analysis will be used to analyze interview data; directed content analysis will be used for documentary evidence. Discussion While previous studies report that families experience significant challenges and emotional toll during transition, it is not known how they adapt to these challenges. Through this study, we will identify what is currently working for families, what they continue to struggle with, and what their most urgent needs are in relation to transition. The anticipated findings will inform both practice solutions and policy changes to address the needs of these families during transition. This study will contribute to the evidence base needed to develop novel solutions and advance policies that will meaningfully support successful transitions for families of youth with medical complexity.

Health schools as an organizational form of realization of the “life course health development” concept

This study was conducted to evaluate the effectiveness of health education in the Tatarstan Republic by establishing educational programs – Health Schools – for groups of patients with a high risk of developing potentially fatal cardiac and respiratory conditions. The concept of “Life Course Health Development” implies the development of mechanisms for personalized health management. The goal of the study is to explore the effectiveness of the specialized Health Schools in Tatarstan. For the comparative study of health education effects on the overall state of personal health, 590 patients were surveyed in a randomized controlled trial. The groups of patients were compared in relation to their health education; their health status was observed prior to and afterward undergoing the educative preventative programs and estimated in comparison between the two groups. Extrapolation of the data on Tatarstan’s patient population was obtained through this study, taking into account the state of health of the Health Schools students, obtaining the regression equations of population mortality and the effects of training on it. The effectiveness of Health Schools for patients with cardiovascular pathology has been proven. However, additional efforts are required to involve a wider range of patients and increase learning effectiveness to critical levels of awareness by introducing new forms of education in Health Schools since it statistically significantly increased the awareness level regarding disease nature and preventive measures.

Multi-omics signatures of the human early life exposome

Environmental exposures during early life play a critical role in life-course health, yet the molecular phenotypes underlying environmental effects on health are poorly understood. In the Human Early Life Exposome (HELIX) project, a multi-centre cohort of 1,301 mother-child pairs, we associated individual exposomes consisting of >100 chemical, physical and lifestyle exposures assessed in pregnancy and childhood, with multi-omics profiles (methylome, transcriptome, metabolome and proteins) in childhood. We identified 1,170 associations, 249 in pregnancy and 921 in childhood, which revealed potential biological responses and sources of exposure. The methylome best captures the persistent influence of pregnancy exposures, including maternal smoking; while childhood exposures were associated with features from all omics layers, revealing novel signatures for indoor air quality, essential trace elements, endocrine disruptors and weather conditions. This study provides a unique resource (https://helixomics.isglobal.org/) to guide future investigation on the biological effects of the early life exposome.