When I wrote about the NHS’ plain language website, I had strongly wished for something like it in India. While that still remains an ambitious wish, I was heartened to recently discover PatientsEngage, a platform dedicated to making chronic health conditions easier to understand, and thereby, manage. It also features lived experiences of people with conditions such as cancer, arthritis, and heart disease, which makes it more relatable to other patients and their families.
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Vijayalaxmi Hegde (VH): How did you get started with PatientsEngage?
Aparna Mittal (AM): I was a senior executive and business head at a company that sold CRM software to pharma companies. This gave me insight into how these companies worked with the medical community. One thing led to another and I stumbled upon the concept of patient engagement around the same time. The concept was already at least a decade old in the West, but unheard of in Asia.
I realized that for patients and their caregivers in India and other Asian countries it is not enough to end up at a Johns Hopkins or Mayo Clinic website. We needed our specific context. Also, people were looking for lived experiences. If Indians wanted advice on living with a condition, it could only be accessed from these sites that were tailored to Western contexts.
PatientsEngage came about to localize health information for people dealing with chronic conditions and for their families or caregivers. We also wanted to share their lived experiences, which help other patients and their caregivers to learn and cope. It may not be medical expertise, but it gives valuable insights into how to live with a condition 24/7. This is something you cannot get from a clinician. We started with three conditions–diabetes, cancer, and arthritis–in June 2014.
VH: What was your idea of health literacy when you started?
AM: By health literacy, we meant content that could be easily understood by a highschooler. No fancy language. Even when we edit personal voices, we don’t rewrite people’s words. We edit it for grammar and clarity, but keep their voice. This has been intentional from the start.
In the West, a lot of medical content has moved to plain language. On our site, we try to communicate as clearly as possible, but I think we still don’t meet clear English standards when it comes to the content we get from healthcare professionals. They are so used to thinking and speaking in medical terminology that they sometimes struggle to explain in layperson’s language.
VH: Were you aware of plain language when you started PatientsEngage?
AM: No, I heard of the term “plain language” only in the last five years or so. But we have always tried to hold the intention of clear communication. Interestingly, translation holds a mirror to the content. We often realize something is not clear when we try to translate the content from English to Hindi. Then we go back and see how we can better explain a term.
VH: How are plain language and health literacy relevant to a developing country like India?
AM: I came across a statistic somewhere that 95% of chronic condition management happens outside the clinical arena. And this was in the Western context where consultation times are typically longer.
In India, for many an appointment with a doctor may be more infrequent or very brief. Hence there is little possibility of a detailed understanding of the condition and how to manage it. Back home, the patient and their family must make many decisions related to managing the condition. What would be useful is for someone to explain to them in plain language or even share plain language resources that would enable them to make informed decisions and manage their condition well.
Our goal is also to bring patients and their lived experiences into policy-making process, to get them to be a part of research design or health committees. Again, plain language is indispensable in this process. If they [patients and caregivers] are sitting on a committee and the experts use jargon, they cannot contribute effectively and do not feel included.
The term “plain language” is better than asking for something to be explained in simple language. It has a negative connotation. I like it [plain language] even better than saying, “Explain [something] to me like I am a five-year-old or as if I am your grandmother.”
We see plain language and health literacy as tools for patients and their families to gain agency. Policy makers must understand that health literacy drives better health outcomes.
VH: How do decision makers react when you talk of plain language, patient engagement, or patient participation?
AM: It is a slow process. We are finding allies, but slowly. They believe in it and are happy to find an organisation they can work with and a growing set of trained patient advocates available to support this. This is an evolving state.
I met a patient advocate from the UK. He told me to have faith and that we are now where they were 25 years ago. That is true. But it may be much tougher for us. We are a more paternalistic society with limited resources.
I wish we could skip this learning curve though. Like India leapfrogged large scale reliance on mainframes and went straight to UNIX and Open Systems. Similarly, why can’t we take advantage of all the health literacy lessons that other countries have learned and skip the learning curve? Is that wishful thinking?
VH: How do you handle misinformation?
AM: Every story goes through an editorial process. We validate all claims and if there’s something we can’t validate we don’t run it. Someone who had vitiligo said they avoided all white food items like salt, rice, sugar, and it helped them. Now, it may be true that some of these foods can be inflammatory and hence avoiding them may have helped in some way. But the reasoning is wrong: that because they were white they had to be avoided.
We have either backed away from such stories or published them with a note to the reader when we couldn’t fact-check the claims or they didn't follow evidence-based care protocols. We have also done this with new and experimental treatments. We wait for the evidence to develop before we publish about it.
With social media and now artificial intelligence (AI), this approach becomes all the more important. The desire to simply forward stuff is so strong. Even, intelligent, educated people do not stop to check a link before passing it along.
