Health Literacy

Health Literacy

We are committed to improving health literacy as part of our mission to save and improve lives.

RESOURCES

Health literacy is vital for health, be it living healthy, disease prevention or to achieve the best possible results from medical care. We must partner with patients to promote their understanding of their medical condition or disease, the reasons they are being treated, and the appropriate use of their medications and other treatments.

Since its inception in 1891, our company has pushed the boundaries of science with the hope and expectation that advancing scientific knowledge will lead to major advances in health. Our commitment to improving patient health outcomes extends to our commitment to health literacy.

Health literacy can affect a person’s ability to access health care services, use services appropriately, adopt health-promoting behaviors, manage chronic conditions, navigate the health care system, and act on health-related news and information.1, 2

Health literacy challenges can affect people of all ages, races, incomes and educational levels. Some population groups in the U.S. are more vulnerable to low health literacy. They include the elderly, people with less than a high school education, people living in poverty, racial and ethnic minorities, and people with limited English proficiency.3

Those with limited health literacy are more likely to have chronic conditions and are less able to manage them effectively.4 More than 77 million U.S. adults have basic or below basic health literacy skills.5 In Europe, nearly half of all Europeans have inadequate and problematic health literacy skills according to the European Health Literacy survey financed by the European Commission.

KEY DEFINITION

Health literacy: Health literacy is linked to literacy and entails people’s knowledge, motivation and competence to access, understand, appraise and apply health information in order to make judgments and take decisions in everyday life concerning health care, disease prevention and health promotion, to maintain or improve quality of life during the life course.6 Put simply, it is a person’s ability to obtain, communicate, process, and understand health information.7

POOR HEALTH LITERACY IS A SERIOUS CHALLENGE

According to the World Health Organization (WHO), people with strong health literacy skills enjoy better health and well-being; while those with weaker skills tend to engage in riskier behavior and have poorer health.8 Patients require health literacy skills in order to understand and navigate the health care system, talk to providers, engage in self-management, exercise basic numeracy skills, adopt healthy behaviors, and act on news and information.4, 5 Self-management with the support of health care providers led to better outcomes in various chronic disease areas such as asthma, diabetes or arthritis.9

Health literacy also has an impact on the efficient use of health care resources. According to a systematic review, limited health literacy costs health systems three to five percent of their budget.10 Low health literacy has been estimated to cost the U.S. economy between $106 billion and $236 billion annually.1

Our company recognizes the potential we have to help improve millions of lives by improving how we communicate as we shepherd discoveries from the lab to patients. It will take a multifaceted effort focused on public policy, engaging diverse stakeholders and new ways of communicating. We are calling government agencies, health care providers, patient advocacy groups and health care companies to work together to increase patient understanding of health care and treatment plans.

Our goal is to demonstrate scientific and policy leadership and innovation in health literacy. We publicly share best practices in national and global forums. In 2018, we are beginning six publications about health literacy in several disease areas, as well as broader regional perspectives.

U.S. Initiatives

Active Engagement in the external environment: sharing best practices

Beyond individual skills, there is a need to reduce the complexity of the health care system. Many organizations share our commitment to addressing these issues, including the U.S. Food and Drug Administration (FDA), payers, integrated health systems, large medical groups, civic organizations and patient advocates.

We proudly participate in both the National Academies’ Health Literacy Roundtable and the Roundtable on the Promotion of Health Equity and the Elimination of Health Disparities. In November, 2017, we shared our company’s perspective on the importance of health literacy at the Health Literacy Roundtable workshop. We are currently involved in a pharmaceutical collaborative of the Health Literacy Roundtable, as well as a Public-Private Partnership Health Literacy workgroup. Over time, both groups plan to publish documentation, for the purpose of sharing best practices.

We have made important strides in developing health-literate patient labeling for new molecules, and share these efforts nationally and internationally as a potential model for the FDA and others in industry. Development includes significant input from people across a range of health literacy levels. In November, 2017, we were invited by the FDA to present “Incorporating Health Literacy into the Development and Testing of Patient Labeling” at a labeling conference, with over 2,000 registered attendees in 42 countries.

We also shared this approach at the Health Literacy Annual Research Conference in October 2017.

Over the past few years, we have had five health-literate labels approved by the FDA. In 2018, our Product Labeling Group formalized a standard operating process document for the development of patient labeling for new molecules, an example of an increased focus on health literacy at our company.

In 2016, our manufacturing division began to apply a similar process to the development of an “Instructions for Use” (IFU) guide—labeling which accompanies combination products. In 2017, our first IFU using this approach was approved.

At the Institute for Healthcare Advancement health literacy conference in May 2018, we led a breakout session, “Convincing Leaders to Commit to Health Literacy,” reinforcing the importance of pilots to demonstrate impact, alignment to company mission and senior sponsorship. At the same meeting, our market research director received the research award for his co-leadership of the Health Literacy Initiative of Intellus Worldwide, looking at health literacy from the lens of patients and other stakeholders.

CHANGING OUR CULTURE: COMMITMENT ACROSS THE ENTERPRISE

In addition to have a person dedicated full-time to health literacy at our company, there are dozens of champions across our global organization, who work to apply health literacy principles to patient communications. They include representatives from manufacturing, clinical research, marketing, policy and global population health. In 2017, there were three special assignments in health literacy, focusing on early clinical research, clinical trial diversity and health literacy and diversity and inclusion.

We work to educate our own employees about creating health-literate communications in various ways. In 2017, over 450 employees across divisions participated in day-long health literacy training sessions. Through our online training program, we provide clear instructions on how to implement health literacy best practices.

A committee within our company’s Investigator Studies Program is focused on patient engagement, diversity and health literacy. We have funded external research on an annual basis since 2015.  

Global Initiatives

At the European Union level, the role of health literacy is recognized by high-level decision-making bodies. Both the conclusions of the Council of the European Union and the “Riga Roadmap”—a joint declaration by industry, civil society and patient organizations—refer to the importance of health literacy.11, 12

We collaborate with various stakeholders in policy development for health literacy and support programs that improve the health literacy levels of citizens and patients. In Europe, we do so together with European associations of physicians, patients, universities and policy makers from the European Parliament and other EU institutions.

Throughout 2017, we expanded our engagement to advance health literacy within the field of cancer. Patients with higher health literacy levels are better able to navigate and access the health system, understand the importance of cancer prevention, seek earlier diagnosis and adhere better to treatment.To that end, we supported the “Biomarker Literacy” initiative of the European Cancer Patient Coalition that aims to create awareness and to improve patients’ knowledge about biomarkers.13

We developed infographics showing the importance of health literacy in the context of biomarker testing for cancer therapy. We supported a survey among gastric cancer patients which assessed their knowledge and experience of treatment. These findings may improve these conditions and treatments for other patients. Health literacy was also recognized as an important component to improved cancer care by All.Can, a multi-stakeholder platform to foster sustainable cancer care, of which our company is a member.14

Our U.S. health literacy efforts to create more health-literacy friendly labels are also now beginning to have an impact in Europe. Patient labeling which is developed and approved in the U.S. often forms the foundation for patient leaflets in Europe. The process used to develop and test health-literate patient labeling for new molecules was shared as a best practice in May at a European labeling conference in Denmark.

Also, the European Medicines Agency (EMA) recently approved an updated IFU, based on our U.S. approach to include health literacy principles.

In 2015–2016, in advance of an EU requirement to publish a public summary of each clinical trial beginning in 2019, two of our employees were invited to participate in an EMA Task Force. Patient representatives were also part of this task force. As an input to support simple, clear summaries, MSD created and tested a sample lay summary, published in 2018: “Clinical Trial Results Summary for Laypersons: A User Testing Study.”

The final EMA guidance was issued in 2017, and reflects health literacy, numeracy, and readability principles. The MSD testing was also presented during an oral session of the Health Literacy Annual Research Conference in 2017. The user testing will also be presented at the International Pharmaceutical Federation (FIP) Congress in Scotland in September 2018.

Looking ahead, we have a leadership role in a multi-stakeholder project about health literacy in clinical trials at the Multi-Regional Clinical Trials Center of Brigham and Women’s and Harvard. The work of the group will be available by 2019.

Specific efforts in Europe include:

BELGIUM

MSD Belgium has given annual awards to recognize and reward health literacy projects.  For the five-year celebration of the “Well Done MSD Health Literacy Awards,” there was a Health Literacy Day at the Belgian Federal Parliament. This day consisted of three major components: a debate with all stakeholders, the Health Literacy award session and an exposition of the award winners of the last five years.

ITALY

MSD Italy supports Patient Academy, a network of over 30+ patient associations focused on training to support patient engagement and empowerment. Examples include: communicating with the media, interacting with policy stakeholders, leveraging social media, improving communication with physicians and improved digital health use and understanding.

MSD Italy also supports improved health literacy in many ways, including:

  • “Shortness of breath” movie highlighting the impact of pulmonary hypertension on daily quality of life
  • SITA Campaign on Antimicrobial Resistance (AMR)
  • HCV Zero, an awareness project in collaboration with the patient advocacy group Epac
  • “Let’s focus on HIV,” an awareness campaign focused on HIV prevention
  • Several cancer awareness campaigns, focusing on prevention, impact of quality of life, and other resources
  • LOVE YOURSELF, a consumer campaign aimed at increasing awareness on menopause

FRANCE

MSD France supports the project “University of Patients” (Université des patients). Through this project, France will become the first country to train patients to become experts in managing their disease, transforming their experience into expertise for health care systems. MSD is the first pharmaceutical company to support such an initiative.

The Ritu’elles initiative is a prevention campaign model dedicated to women’s health. In 2018, this village gathered more than 10 partners (patient associations and learned societies).The gathering was supported by local policy makers. By reinforcing women’s empowerment and promoting prevention, MSD France supports the Health Minister’s priorities.

HUNGARY

One of every two Hungarians has insufficient health literacy levels. Under the leadership of MSD, the Association of Innovative Pharmaceutical Manufacturers (AIPM) created a working group on health literacy to close this gap and advance health literacy on the public health agenda. Projects include:

  • It speaks to me! Health Literacy Award 2017: Submissions came from health care and educational institutions, healthcare professionals, patient organizations, social public and business organizations
  • Academy for Patient Organizations: The AIPM conducts lecture series and provides online materials to help Hungarian patient organizations improve their skills. More than 60 groups have joined.
  • Academy of PAGs Expo of 2017: This is the first Hungarian knowledge exchange among patient organizations. The goal is to bring together medical professionals and representatives of patient organizations to enhance health literacy.

IRELAND

MSD Ireland partners with the National Adult Literacy Agency (NALA) to promote increased health literacy across the country. In 2017, efforts focused on the Crystal Clear Mark—a national programme that offers pharmacies and general practices the opportunity to gain a unique quality mark. Developed by The Irish Pharmacy Union (IPU), MSD and NALA, it recognizes pharmacies and general practices for health-literate care. Participants must have a literacy policy and procedures to help patients find and use health information. Nine additional pharmacies were accredited in 2017.

GERMANY

MSD Germany supports the German Coalition for Patient Safety (“Aktionsbündnis Patientensicherheit”). This is an association of organizations and individuals interested in strengthening health literacy. Working groups develop patient safety recommendations, open-access documents distributed within health care institutions for free.

The BAGSO (Bundesarbeitsgemeinschaft für Seniorenorganisationen) is the largest umbrella organization of elderly people. In 2017, MSD Germany sponsored the BAGSO-Expert forum “Strengthen Patients and Accompany Them.”

MSD Germany supports a number of projects of patient organizations at the federal and regional level to address and improve health literacy. MSD actively participates in a pharmaceutical consortium to implement a digital system of user-friendly materials for patients.

POLAND

In collaboration with public and private partners, MSD Poland’s Women’s Health Foundation (WHF) promoted women’s health, including HPV infection and cardiovascular disease prevention.

Other initiatives include:

  • “Choose Life—First Step” (school-based HPV prevention)
  • “Don’t Pay for Mistakes—Better Prevent!” (HPV prevention and screening in disenfranchised women)
  • “Women’s Health Promotion Forum” and “Vital Polish Women” campaign

SPAIN

In 2017, MSD Spain initiated a number of programs, including:

  • MSDsalud (a website to improve health literacy of citizens, patients and caregivers)
  • Patient organization projects (more than 30 projects in health literacy developed by patient organizations in the areas of cancer, HIV, Hepatitis C, Diabetes, Alzheimer’s, Arthritis, Inflammatory Bowel Disease and rare diseases)
  • In 2017, MSD Spain supported the first Spanish Patients Congress focused on improving members’ knowledge of health literacy

MSD Spain also supports the initiatives of Plataforma de Organizaciones de Pacientes (Patients Organizations Platform), the most important patient organization in Spain. In 2017, they organized the first Spanish Patients Congress focusing on improving members’ level of knowledge of health literacy.

New Global Efforts

Our company is expanding its footprint and commitment in health literacy beyond the U.S. and Europe. In Latin America, our Global Medical Affairs group has been working to highlight the importance of health literacy in anti-microbial stewardship and anesthesia. The group published 12 principles to remember before starting an antibiotic.

We have also demonstrated a commitment to health literacy in Asia. In 2017 we conducted a plenary address at the Asia Health Literacy Association conference and in 2018 we had the opportunity to speak about health literacy at a conference in Singapore.

1. U.S. Department of Health and Human Services (HHS). Quick Guide to Health Literacy. http://health.gov/communication/literacy/quickguide/Quickguide.pdf. Accessed June 22, 2016.
2. HHS. Quick Guide to Health Literacy. Fact Sheet. Health Literacy. Basics. https://health.gov/communication/literacy/quickguide/factsbasic.htm. Accessed: July 9, 2018.
3. HHS. Office of Disease Prevention and Health Promotion. National Action Plan to Improve Health Literacy. Washington, D.C.: 2010. https://health.gov/communication/hlactionplan/pdf/Health_Literacy_Action_Plan.pdf. Accessed October 13, 2017.
4. HHS. Quick Guide to Health Literacy and Older Adults. http://health.gov/communication/literacy/olderadults/literacy.htm. Accessed June 22, 2016.
5. Kutner M, Greenberg E, Jin Y, Paulsen C. The health literacy of America’s adults: Results from the 2003 National Assessment of Adult Literacy (NCES 2006–483). U.S. Department of Education. Washington, D.C.: National Center for Education Statistics, 2006. https://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2006483. Accessed October 13, 2017. https://www.ahrq.gov/downloads/pub/evidence/pdf/literacy/literacyup.pdf. Accessed October 13, 2017.
6. Sorensen K, Van den Broucke S, Fullam J, et al. Health literacy and public health: A systematic review and integration of definitions and models. BMC Public Health. 2012:12:80. https://doi.org/10.1186/1471-2458-12-80. Accessed October 13, 2017.
7. U.S. Department of Health and Human Services. 2000. Healthy People 2010. Washington, DC: U.S. Government Printing Office. Originally developed for Ratzan SC, Parker RM. 2000. Introduction. In National Library of Medicine Current Bibliographies in Medicine: Health Literacy. Selden CR, Zorn M, Ratzan SC, Parker RM, Editors. NLM Pub. No. CBM 2000-1. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services.
8. WHO Europe. Health literacy: The solid facts. Kickbusch I, Pelikan JM, Apfel F, Tsouros AD, eds. 2013. http://www.euro.who.int/en/publications/abstracts/health-literacy.-the-solid-facts. Accessed December 31, 2015.
9. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient self-management of chronic disease in primary care. JAMA [Internet]. 2002 Nov 20 [cited 2017 Jan 18];288(19):2469–75. Available from: http://www.ncbi.nlm.nih.gov/pubmed/12435261.
10. Eichler K, Wieser S, Bruegger U. The costs of limited health literacy: A systematic review. Int J Public Health. 2009;54(5):313. https://doi.org/10.1007/s00038-009-0058-2. Epub 2009 Jul 31.
11. Council of the European Union (2015/C 421/03). Council conclusions on personalised medicine for patients. Official Journal of the European Union, C 421/2. http://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A52015XG1217(01). Accessed October 13, 2017.
12. The Riga Roadmap. Investing in Health and Wellbeing for All. 2015. http://rigahealthconference2015.eu/wp-content/uploads/2015/08/Riga-Roadmap-download-FINAL.pdf. Accessed May 13, 2016.
13. European Cancer Patient Coalition. Survey: How much do you know about biomarkers? http://www.ecpc.org/news-categories/policy-and-advocacy/421-survey-how-much-do-you-know-about-biomarkers. Accessed March 14, 2017.14. Wait S, Han D, Muthu V, et al. Towards sustainable cancer care: Reducing inefficiencies, improving outcomes—A policy report from the All.Can initiative. J Cancer Policy. 2017;13:47–64. https://doi.org/10.1016/j.jcpo.2017.05.004. Accessed March 14, 2017.