Excerpts from an article by Emma D’Arcy-Sutcliffe, Head of Patient Engagement and Innovation at NexGen Healthcare Communications.
It has been a busy four weeks in the world of ‘patient engagement’ as October is ‘Health Literacy Month’. I’ve been reading, curating and commenting on some brilliant initiatives as global experts and contributors shared insights and case studies about efforts to enhance health literacy. The volume of activity was impressive given that it is often proposed that the concept of health literacy is moot – even doomed — in an age of constant digital grazing when it seems that everyone can find the info they want by hammering out a few search terms on Google. There’s a sense that ‘all patients’ are now empowered and informed. However, once the flurry of the month is over, the dust settles and it is still a startling reality that:
- Up to 61% of English working age adults do not routinely understand health information (NHS England)
- 10% adults participating in oncology phase 1 clinical trials anticipate that they will be ‘cured’ (Sweetman, 2016)
- The International Adult Literacy Scale places the majority of the population’s reading age at the level of a High School Graduate with a significant number of people only achieve a reading age of an 11 year old (IALS, 2018).
There is most definitely a role for the pharmaceutical industry in helping to raise health literacy – specifically an understanding about the drug development process and how research and development (R&D) decisions are made.
To try to plug this gap, in May 2016, the European Commission passed a law requiring the results of a clinical trial to be communicated as a ‘Lay Summary’. All pharmaceutical companies must publish a Patient Summary within a year of a clinical trial ending.
Many companies are using this shift in regulation as an opportunity to usher in a new standard of patient engagement activities and to refresh outdated modes of practice when creating patient materials.
The following are standard principles that are being incorporated:
- Literacy can be defined as a person’s ability to read, write, speak, and compute and solve problems at levels necessary to function on the job and in society, achieve one’s goals, develop one’s knowledge and potential
- Plain language is a strategy for making written and oral information easier to understand. It is one important tool for improving health literacy
- Plain language is communication that users can understand the first time they read or hear it. With reasonable time and effort, a plain language document is one in which people can find what they need, understand what they find, and act appropriately on that understanding
- Key elements of plain language include: organizing information so that the most important points come first, breaking complex information into understandable chunks using simple language and defining technical terms, using the active voice
- Language that is plain to one set of readers may not be plain to others. It is critical to know your audience.
There is more that can be done, however, and there is scope to work with companies to ensure that plain language summaries aren’t just available (as a ‘chore’ published on a company’s website and then done with) but are accessible and provide ongoing opportunities for patients to ask more questions about the trial and the medicines being investigated to build and nourish enduring relationships between patients, their peers, their HCPs and the pharmaceutical company as a preferred partner for real world care. A plain language summary that is co-created with patients should be validated as a gold-standard tool of practice that improves health literacy and augments patient engagement to enable a valuable patient experience.
Pharma companies must provide a high-quality, trusted customer experience from the outset and identify ways to help patients understand, adapt and work with their HCPs and peers towards quotidian improvements in their health. The commitment to prepare Lay Summaries is an essential component towards achieving this objective.
However, we know from our work directly with Lead Patients and Patient Groups that many Lay Summaries are still more suited to Healthcare professionals.
What we are starting to see is academic evidence that good lay summaries, infographics and social sharing on digital platforms is making a difference.
Health literacy month is over, but the endeavour for healthy communications between industry and patients never ends. So it is back to my desk – and back to my stepson – to keep lobbying about the voice of the patient, the voiceover by patients and the key role of the industry in shared and self-health education.
Read the full article here: https://www.linkedin.com/pulse/health-literacy-plain-language-everyday-emma-d-arcy-sutcliffe/