Strasbourg, 5 May 2022                                                                         CDBIO(2022)6Addendum






to the Draft prepared by the Drafting Group on Health Literacy (CDBIO/HL)

with the support of the consultant experts, Kristine Sørensen (Denmark)

and Leena Paakkari (Finland)


Abdel-Latif, M. M. M. (2020). The enigma of health literacy and COVID-19 pandemic. In Public Health (Vol. 185, pp. 95–96). Elsevier B.V.

Agency for Healthcare Research and Quality. (2017). AHRQ Health Literacy Universal Precautions Toolkit (2.).

Aluttis, C., Chiotan, C., Michelsen, M., Costongs C, \, Brand, H., & on behalf of the public health capacity consortium. (2013). Review of Public Health Capacity in the EU. In x. European Commission Directorate General for Health and Consumers.

Arcia, A., Bales, M. E., Brown, W., Co, M. C., Gilmore, M., Lee, Y. J., Park, C. S., Prey, J., Velez, M., Woollen, J., Yoon, S., Kukafka, R., Merrill, J. A., & Bakken, S. (2013). Method for the development of data visualizations for community members with varying levels of health literacy. AMIA ... Annual Symposium Proceedings / AMIA Symposium. AMIA Symposium, 2013, 51–60. /pmc/articles/PMC3900122/

Australian Commission on Safety and Quality in Health Care. (2014). Health literacy: Taking action to improve safety and quality. ACSQHC.

Ayalon, L., Chasteen, A., Diehl, M., Levy, B. R., Neupert, S. D., Rothermund, K., Tesch-Römer, C., & Wahl, H. W. (2021). Aging in Times of the COVID-19 Pandemic: Avoiding Ageism and Fostering Intergenerational Solidarity. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 76(2), e49–e52.

Baskaradoss, J. K. (2016). The association between oral health literacy and missed dental appointments. Journal of the American Dental Association, 147(11), 867–874.

Batterham, R. W., Buchbinder, R., Beauchamp, A., Dodson, S., Elsworth, G. R., & Osborne, R. H. (2014). The OPtimising HEalth LIterAcy (Ophelia) process: Study protocol for using health literacy profiling and community engagement to create and implement health reform. BMC Public Health, 14(1).

Beaunoyer, E., Dupéré, S., & Guitton, M. J. (2020). COVID-19 and digital inequalities: Reciprocal impacts and mitigation strategies. Computers in Human Behavior, 111, 106424.

Blandford, A., Wesson, J., Amalberti, R., AlHazme, R., & Allwihan, R. (2020). Opportunities and challenges for telehealth within, and beyond, a pandemic. In The Lancet Global Health (Vol. 8, Issue 11, pp. e1364–e1365). Elsevier Ltd.

Bo, A., Friis, K., Osborne, R. H., & Maindal, H. (2014). National indicators of health literacy: ability to understand health information and to engage actively with healthcare providers - a population-based survey among Danish adults. BMC Public Health, 14(1), 1095.

Brach, C. (2017). The Journey to Become a Health Literate Organization: A Snapshot of Health System Improvement. Studies in Health Technology and Informatics, 240, 203–237.

Brach, C., Dreyer, B. P., Schyve, P., Hernandez, L. M., Baur, C., Lemerise, A. J., & Parker, R. M. (2012). Attributes of a Health Literate Organization. Institute of Medicine.

Brall, C., Schröder-Bäck, P., & Maeckelberghe, E. (2019). Ethical aspects of digital health from a justice point of view. European Journal of Public Health, 29(Supplement_3), 18–22.

Brust-Renck, P. G., Nolte, J., & Reyna, V. F. (2017). Numeracy in Health and Risk Messaging. Oxford Research Encyclopedia of Communication.

Chan, C. v., & Kaufman, D. R. (2011). A framework for characterizing ehealth literacy demands and barriers. Journal of Medical Internet Research, 13(4).

Chen, X., Hay, J. L., Waters, E. A., Kiviniemi, M. T., Biddle, C., Schofield, E., Li, Y., Kaphingst, K., & Orom, H. (2018). Health Literacy and Use and Trust in Health Information. Journal of Health Communication, 23(8), 724–734.

Coleman, C. A., Hudson, S., & Maine, L. L. (2013). Health literacy practices and educational competencies for health professionals: a consensus study. Journal of Health Communication, 18 Suppl 1(sup1), 82–102.

Council of Europe. (1997). Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine.

Council of Europe. (2020). Strategic Action Plan on Human Rights and Technologies in Biomedicine (2020-2025).

Crawford, A., & Serhal, E. (2020). Digital health equity and COVID-19: The innovation curve cannot reinforce the social gradient of health. In Journal of Medical Internet Research (Vol. 22, Issue 6, p. e19361). JMIR Publications Inc.

Cronin, R. M., Hankins, J. S., Byrd, J., Pernell, B. M., Kassim, A., Adams-Graves, P., Thompson, A. A., Kalinyak, K., DeBaun, M. R., & Treadwell, M. (2018). Modifying factors of the health belief model associated with missed clinic appointments among individuals with sickle cell disease. Hematology, 23(9), 683–691.

Direção-Geral da Saúde. (2018). Plano de ação para a literacia em saúde health literacy action plan portugal 2019-2021.

Dixon-Woods, M., Cavers, D., Agarwal, S., Annandale, E., Arthur, A., Harvey, J., Hsu, R., Katbamna, S., Olsen, R., Smith, L., Riley, R., & Sutton, A. J. (2006). Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. In BMC Medical Research Methodology (Vol. 6, Issue 1, p. 35). BioMed Central.

Dougherty, L., Lloyd, J., Harris, E., Caffrey, P., & Harris, M. (2020). Access to appropriate health care for non-English speaking migrant families with a newborn/young child: a systematic scoping literature review. BMC Health Services Research, 20, 1–12.

Durand, M. A., Carpenter, L., Dolan, H., Bravo, P., Mann, M., Bunn, F., & Elwyn, G. (2014). Do interventions designed to support shared decision-making reduce health inequalities? A systematic review and meta-analysis. PloS One, 9(4).

Edwards, M., Wood, F., Davies, M., & Edwards, A. (2012). The development of health literacy in patients with a long-term health condition: the health literacy pathway model. BMC Public Health, 12(1), 130.

Elwyn, G., Frosch, D. L., & Kobrin, S. (2016). Implementing shared decision-making: Consider all the consequences. Implementation Science, 11(1), 114.

European Commission. (n.d.). A Europe fit for the digital age. Retrieved April 30, 2021, from

European Patients Forum. (2015). The Patients’ Charter on Patient Empowerment.

Finke, E. H., Light, J., & Kitko, L. (2008). A systematic review of the effectiveness of nurse communication with patients with complex communication needs with a focus on the use of augmentative and alternative communication. Journal of Clinical Nursing, 17(16), 2102–2115.

Finset, A., Bosworth, H., Butow, P., Gulbrandsen, P., Hulsman, R. L., Pieterse, A. H., Street, R., Tschoetschel, R., & van Weert, J. (2020). Effective health communication – a key factor in fighting the COVID-19 pandemic. In Patient Education and Counseling (Vol. 103, Issue 5, pp. 873–876). Elsevier Ireland Ltd.

Gilmour, J. A. (2007). Reducing disparities in the access and use of Internet health information. A discussion paper. In International Journal of Nursing Studies (Vol. 44, Issue 7, pp. 1270–1278). Elsevier Ltd.

Gulliford, M. (2017). Access to primary care and public health. The Lancet Public Health, 2(12), e532–e533.

Ha, J. F., & Longnecker, N. (2010). Doctor-patient communication: A review. In Ochsner Journal (Vol. 10, Issue 1, pp. 38–43). Ochsner Clinic, L.L.C. and Alton Ochsner Medical Foundation.

Halvorsen, K., Dihle, A., Hansen, C., Nordhaug, M., Jerpseth, H., Tveiten, S., Joranger, P., & Ruud Knutsen, I. (2020). Empowerment in healthcare: A thematic synthesis and critical discussion of concept analyses of empowerment. Patient Education and Counseling, 103(7), 1263–1271.

Hasnain-Wynia, R., & Wolf, M. S. (2010). Promoting health care equity: is health literacy a missing link? Health Services Research, 45(4), 897–903.

Haun, J., McCormack, L., Valerio, M., & Sorensen, K. (2014). Health Literacy Measurement: Health Literacy Measurement: An inventory and descriptive summary of 52 instruments. Journal of Health Communication.

Hawe, P., Noort, M., King, L., & Jordens, C. (1997). Multiplying health gains: the critical role of capacity-building within public health programs. Health Policy, 39:, 29-42.

Health at a Glance: Europe 2018. (2018). OECD.

Health Literacy Innovations. (2016). Health Literacy Innovations.

Health Quality & Safety Commission New Zealand. (n.d.). Three steps to better health literacy – a guide for health professionals.

Heisler, M., Bouknight, R. R., Hayward, R. A., Smith, D. M., & Kerr, E. A. (2002). The relative importance of physician communication, participatory decision making, and patient understanding in diabetes self-management. Journal of General Internal Medicine, 17(4), 243–252.

Hochmut, N., & Sørensen, K. (2021). Health literate companies - a systematic literature review. Journal of Health Literacy Research and Practice, In print.

Inoue, Y., Sato, M., & Filo, K. (2020). Transformative Sport Service Research: Linking Sport Services With Well-Being. Journal of Sport Management, 34(4), 285–290.

Karuranga, S., Sørensen, K., Coleman, C., & Mahmud, A. J. (2017). Health Literacy Competencies for European Health Care Personnel. HLRP: Health Literacy Research and Practice, 1(4), e247–e256.

Kashaf, M. S., McGill, E. T., & Berger, Z. D. (2017). Shared decision-making and outcomes in type 2 diabetes: a systematic review and meta-analysis. Patient Education and Counseling, 100(12), 2159–2171.

Kaurin, D. (2020). Space and imagination: rethinking refugees’ digital access.’-digital-access_WEB042020.pdf

Kickbusch, I. (2004). Health and citizenship: the characteristics of 21st century health. World Hosp Health Serv., 40(4), 12–14.

Kickbusch, I., Agrawal, A., Jack, A., Lee, N., & Horton, R. (2019). Governing health futures 2030: growing up in a digital world—a joint The Lancet and Financial Times Commission. The Lancet, 394, 1309.­6736(19)32181­6

Koh, H. K., Baur, C., Brach, C., Harris, L. M., & Rowden, J. N. (2013). Toward a systems approach to health literacy research. In Journal of Health Communication (Vol. 18, Issue 1, pp. 1–5). NIH Public Access.

Koh, H. K., Berwick, D. M., Clancy, C. M., Baur, C., Brach, C., Harris, L. M., & Zerhusen, E. G. (2012). New Federal Policy Initiatives To Boost Health Literacy Can Help The Nation Move Beyond The Cycle Of Costly ‘Crisis Care.’ Health Affairs, 31(2), 434–443.

Košir, U., & Sørensen, K. (2020). COVID-19: the key to flattening the curve is health literacy. Perspectives in Public Health.

Krumholz, H. M. (2010). Informed consent to promote patient-centered care. In JAMA - Journal of the American Medical Association (Vol. 303, Issue 12, pp. 1190–1191).

Kyle, M. A., Seegars, L., Benson, J. M., Blendon, R. J., Huckman, R. S., & Singer, S. J. (2019). Toward a Corporate Culture of Health: Results of a National Survey. Milbank Quarterly.

Levy, H., & Janke, A. (2016). Health Literacy and Access to Care. Journal of Health Communication, 21(sup1), 43–50.

Marmot, M., Friel, S., Bell, R., Houweling, T. A., & Taylor, S. (2008). Closing the gap in a generation: health equity through action on the social determinants of health. The Lancet, 372(9650), 1661–1669.

McIntyre, D., Thiede, M., & Birch, S. (2009). Access as a policy-relevant concept in low- and middle-income countries. Health Economics, Policy and Law, 4(2), 179–193.

McQueenie, R., Ellis, D. A., McConnachie, A., Wilson, P., & Williamson, A. E. (2019). Morbidity, mortality and missed appointments in healthcare: A national retrospective data linkage study. BMC Medicine, 17(1), 2.

Moorhead, S. A., Hazlett, D. E., Harrison, L., Carroll, J. K., Irwin, A., & Hoving, C. (2013). A new dimension of health care: Systematic review of the uses, benefits, and limitations of social media for health communication. In Journal of Medical Internet Research (Vol. 15, Issue 4, p. e1933). JMIR Publications Inc.

Nutbeam, D., & Muscat, D. M. (2020). Advancing Health Literacy Interventions. In Studies in Health Technology and Informatics (Vol. 269, pp. 115–127). IOS Press.

Okan, O., Bauer, U., Levin-Zamir, D., Pinheiro, P., & Sørensen, K. (2019). International Handbook of Health Literacy: research; practice and policy across the life-span. (O. Okan, U. Bauer, D. Levin-Zamir, P. Pinheiro, & Kristine. Sørensen, Eds.). POLICY Press.

Okan, O., Paakkari, L., & Dadaczynski, K. (2021). Health literacy in schools. State of the Art.

Ostini, R., & Kairuz, T. (2014). Investigating the association between health literacy and non-adherence. International Journal of Clinical Pharmacy, 36(1), 36–44.

Paakkari, L., Inchley, J., Schulz, A., Weber, M. W., & Okan, O. (2019). Addressing health literacy in schools in the WHO European Region. 5, 2–3.

Paakkari, L., & Okan, O. (2020). COVID-19: health literacy is an underestimated problem. The Lancet Public Health, 5, e249–e250.

Paakkari, L., & Paakkari, O. (2012). Health literacy as a learning outcome in schools. Health Education, 112(2), 133–152.

Paasche-Orlow, M. K., Parker, R. M., Gazmararian, J. A., Nielsen-Bohlman, L. T., & Rudd, R. R. (2005). The prevalence of limited health literacy. Journal of General Internal Medicine, 20(2), 175–184.

Palumbo, R. (2021). Leveraging organizational health literacy to enhance health promotion and risk prevention: A narrative and interpretive literature review. Yale Journal of Biology and Medicine, 94(1), 115–128.

Patient journey mapping: What you need to know. (n.d.). Retrieved May 1, 2021, from

Pelikan, J. (2016). The Vienna model for health literate hospitals: engaging patients and caregivers. 23.

Poureslami, I., Shum, J., Kopec, J., Sawatzky, R., Gupta, S., Pakhale, S., Kassay, S., Starnes, K., Akhtar, A., & Fitzgerald, J. M. (2020). Development and pretesting of a new functional-based health literacy measurement tool for chronic obstructive pulmonary disease (COPD) and asthma management. International Journal of COPD, 15, 613–625.

Robertson-Preidler, J., Biller-Andorno, N., & Johnson, T. J. (2017). What is appropriate care? An integrative review of emerging themes in the literature. BMC Health Services Research, 17(1), 452.

Rudd, R. R., & Anderson, J. E. (2006). The health literacy environment of hospitals and health centers. Harvard School of Public Health.

Samerski, S. (2019). Health literacy as a social practice: Social and empirical dimensions of knowledge on health and healthcare. Social Science & Medicine, 226, 1–8.

Schyve, P. M. (2007). Language differences as a barrier to quality and safety in health care: the Joint Commission perspective. Journal of General Internal Medicine, 22 Suppl 2, 360–361.

Singh Ospina, N., Toloza, F. J. K., Barrera, F., Bylund, C. L., Erwin, P. J., & Montori, V. (2020). Educational programs to teach shared decision making to medical trainees: A systematic review. In Patient Education and Counseling (Vol. 103, Issue 6, pp. 1082–1094). Elsevier Ireland Ltd.

Sørensen, K. (2014). Professionalizing health literacy: a new public health capacity. European Journal of Public Health, 24(suppl_2).

Sørensen, K., Karuranga, S., Denysiuk, E., & McLernon, L. (2018). Health literacy and social change: exploring networks and interests groups shaping the rising global health literacy movement. Global Health Promotion, 25(4), 89–92.

Sørensen, K., & Okan, O. (2020). Health literacy. Health literacy of children and adolescents in school settings.

Sørensen, K., Pelikan, J. M., Röthlin, F., Ganahl, K., Slonska, Z., Doyle, G., Fullam, J., Kondilis, B., Agrafiotis, D., Uiters, E., Falcon, M., Mensing, M., Tchamov, K., van den Broucke, S., & Helmut Brand. (2015). Health literacy in Europe: Comparative results of the European health literacy survey (HLS-EU). European Journal of Public Health, 25(6).

Sørensen, K., Trezona, A., Levin-Zamir, D., Kosir, U., & Nutbeam, D. (2019). Transforming health systems and societies by investing in health literacy policy and strategy.

Sørensen, K., van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., & Brand, H. (2012). Health literacy and public health: A systematic review and integration of definitions and models. In BMC Public Health (Vol. 12, Issue 1).

Spatz, E. S., Krumholz, H. M., & Moulton, B. W. (2016). The new era of informed consent getting to a reasonable-patient standard through shared decision making. In JAMA - Journal of the American Medical Association (Vol. 315, Issue 19, pp. 2063–2064). American Medical Association.

Statista Research Department. (2021). Share of households with internet access in the European Union (EU) from 2007 to 2020.

Stielke, A., Dyakova, M., Ashton, K., & van Dam, T. (2019). The social and economic benefit of health literacy interventions in the WHO EURO region. European Journal of Public Health, 29(Supplement_4).

Stiggelbout, A. M., van der Weijden, T., de Wit, M. P. T., Frosch, D., Légaré, F., Montori, V. M., Trevena, L., & Elwyn, G. (2012). Shared decision making: Really putting patients at the centre of healthcare. In BMJ (Online) (Vol. 344, Issue 7842). BMJ.

Suka, M., Odajima, T., Okamoto, M., Sumitani, M., Igarashi, A., Ishikawa, H., Kusama, M., Yamamoto, M., Nakayama, T., & Sugimori, H. (2015). Relationship between health literacy, health information access, health behavior, and health status in Japanese people. Patient Education and Counseling, 98(5), 660–668.

The HLS19 Consortium of the WHO Action Network M-POHL. (2021). International Report on the Methodology, Results, and Recommendations of the European Health Literacy Population Survey 2019-2021 (HLS19) of M-POHL.

The Lancet. (2020). COVID-19: fighting panic with information. In The Lancet (Vol. 395, Issue 10224, p. 537). Lancet Publishing Group.

The Lancet Healthy Longevity. (2021). Ageing in a post COVID world. In The Lancet Healthy Longevity (Vol. 2, Issue 2, p. e53). Elsevier Ltd.

Thiede, M. (2005). Information and access to health care: Is there a role for trust? Social Science and Medicine, 61(7), 1452–1462.

Thiede, M., & McIntyre, D. (2008). Information, communication and equitable access to health care: A conceptual note. In Cadernos de Saude Publica (Vol. 24, Issue 5, pp. 1168–1173). Cad Saude Publica.

Trezona, A., Dodson, S., & Osborne, R. H. (2017). Development of the organisational health literacy responsiveness (Org-HLR) framework in collaboration with health and social services professionals. BMC Health Services Research, 17(1), 513.

Trezona, A., Rowlands, G., Nutbeam, D., Trezona, A., Rowlands, G., & Nutbeam, D. (2018). Progress in Implementing National Policies and Strategies for Health Literacy—What Have We Learned so Far? International Journal of Environmental Research and Public Health, 15(7), 1554.

United Health Group. (2020). Improving Health Literacy Could Prevent Nearly 1 Million Hospital Visits and Save Over $25 Billion a Year County Health Literacy Levels Seniors in Counties with the Highest Health Literacy Levels Experience Better Health Outcomes.

United Nations. (2015). The Sustainable Development Agenda.

Volandes, A. E., & Paasche-Orlow, M. K. (2007). Health literacy, health inequality and a just healthcare system. The American Journal of Bioethics : AJOB, 7(11), 5–10.

Wångdahl, J., Lytsy, P., Mårtensson, L., & Westerling, R. (2014). Health literacy among refugees in Sweden - a cross-sectional study. BMC Public Health, 14(1), 1030.


World Health Organization. (2016). Shanghai Declaration on Health Promotion in the 2030 Agenda for Sustainable Development.

World Health Organization. (2021). Health Promotion Glossary of Terms 2021.

World Helalth Organization. (2017). Framework on integrated people-centred health services. World Health Organization.