Get real to improve adherence and outcomes

According to speakers at a recent event on patient adherence and advocacy, it is important to talk to people in a language and style that they comprehend, to improve understanding, promoting uptake of healthier lifestyles and commitment to medicine-taking. Rolf Taylor reports on the key findings from the 6th Patient Adherence and Advocacy Summit.

Poor patient adherence to therapeutic regimens is a frustratingly persistent phenomenon, particularly in the context of long-term management of chronic diseases. Not only are the patients themselves hurt by poorer outcomes, but poor adherence is bad for business and renders medication ineffective.

This conference integrated the themes of advocacy, health literacy, real world outcomes, innovations in digital health, and the importance of the patient voice. Sessions examined how industry and patient organisations can work together to adopt innovative new approaches that can impact the drivers for better patient adherence – and asked the fundamental question: to what extent should improving adherence be a key outcome measure for advocacy organisations?

In the Google era patient organisations have become increasingly important contributors to health literacy, particularly where a new diagnosis tends to result in a keyword search either by the patient or their caregiver. This shift towards patient-friendly materials, often created by patients themselves, has happened quickly. It does not seem that long ago that the medical industry, with its formal style, was the main provider of patient information.

Online communication removes the need for print and post, and has allowed unprecedented numbers of patients to access information, both from organisations and from each other, particularly via social media.

This movement is increasing the importance of ‘real world communications’, which make a lot of sense when health literacy is the single strongest predictor of health status. Laurie Myers, leader of Health Literacy Strategy at Merck, pointed out that industry has learned a great deal from peer-to-peer information sharing and is adopting new best practices to connect more effectively with diverse patient populations.

Nine ways to think about health literacy

1. Health literacy is the strongest predictor of health status

2. Four key groups are particularly vulnerable to low health literacy: elderly, minorities, recent immigrants, and those with low incomes

3. Comprehension, motivation and planning are drivers for self-management and behaviour modification

4. Financial resources help translate health literacy into better adherence

5. New techniques such as ‘Teach Back’ are essential to help raise literacy and retention of knowledge

6. US federal policy initiatives such as National Action Plan to Improve Health Literacy recognise essential contributors to improving outcomes, reducing costs

7. Adopting a conversational tone is key to patient acceptance of medical information

8. Be prepared to use real world vocabulary: ‘pee’ is better than ‘urine’

9. Patient candid feedback on materials is the crucial step.

Points taken from Laurie Myers’ presentation

Connecting with patients in ways which are both compelling and enjoyable is central to mobile application development for health. Michael Fergusson, CEO of Ayago, focused on the concept of gamification, to discuss how creating meaningful and persistent behaviour change through digital patient interfaces is possible as part of interactive online activities. Central to this approach is the idea that if we understand how patients ‘play’ we can adopt similar behaviour patterns to create a context for educational messages.

“Participants were given an environment where serious medical issues were revealed in a safe and engaging process”



A case study illustration of this highlighted how people love soap operas and the general TV series format, where the suspense of moving through a storyline and learning more and more about the characters is both pleasurable and compelling. Using professional scriptwriters to develop a health education narrative, participants were given an environment where serious medical issues were revealed in a safe and engaging process, with the patient playing the role of a character in a drama. Testing showed that patients love to receive information in this way; it is the opposite of classroom-style teaching and allows them to ‘snack’ on a large number of small pieces of information over time.

Understanding and aligning with what interests specific patient groups was also the theme of Boehringer Ingelheim’s (BI) Lisa Valtierra, who spoke on building trust and health engagement with the US’s growing Latin American population. Currently, the US population includes 60 million Latinos, a number projected to double to 120 million by 2060.

This population has a different attitude to health compared to its neighbours, with an emphasis on fatalism, or ‘fatalismo’, which can deter patients from proactively seeking screening and diagnosis for common diseases. In addition, most health decisions are made in the context of the family and, once diagnosed, a family will demand the best branded medicine. But health literacy is low, both as a result of fatalism deterring information-seeking, and also, crucially, through a simple lack of information being available in the Spanish language.

For this reason certain conditions are not diagnosed with the right medical terms because they may not be understood. A good example is COPD, which is often purposely misdiagnosed as asthma because awareness and understanding of COPD is particularly low in this group.

As part of a general campaign to improve engagement and adherence in type 2 diabetes management in the Latino population, BI developed the “CUIDA TU DON” campaign, working with the entertainer ‘Don Francisco’. Cuida tu Don translates as ‘Take Care of Your Gift’ and strongly emphasises health and life as a gift. Don Francisco is the central figure on a website which provides health information carefully developed to be culturally sensitive and at an appropriate literacy level.

“This conference highlighted the importance of gaining genuine alignment with how patients, think, speak and act”


This conference highlighted the importance of gaining genuine alignment with how patients, think, speak, and act. Direct engagement with patients through social media, awareness campaigns, and educational programmes all promote improved health literacy, but can only be effective if diverse patient voices are integrated. In the real world, effective approaches to improved patient adherence need to integrate patient-centric care provision with patient-centric information provision.

Patient and caregiver engagement, self-management and improved health literacy are all key drivers for improving outcomes. By focusing on improving health literacy, industry and advocacy organisations are creating the best possible environment for innovative patient engagement and adherence tools to be developed and adopted. True personalised medicine will incorporate tailored approaches to communication with the goal of improving literacy and engagement and thus adherence, with peer-to-peer communications via advocacy groups being an essential component.

About the author:

Rolf Taylor is executive vice president, Strategy & Partnerships, at the Global Liver Institute. His career in healthcare started in industry with GlaxoSmithKline and Roche, before specialising in marketing communications strategy on the agency side with Medical Action Communications. Since 2007 Rolf has led development and programme strategy at several healthcare advocacy organisations, where he has built a number of innovative industry/advocacy collaborations and initiatives.

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