In China, diabetes patients are hungry for information about their condition, and are taking to social media to discuss it. But, asks Simon Li, is pharma paying attention?
Diabetes is a rapidly growing global health issue. More than 380 million people had diabetes in 2013, and the International Diabetes Federation (IDF) estimates this population will rise to 592 million by 2035, and the World Health Organization predicts that diabetes will be the seventh leading cause of death in 2030.
While diabetes is sometimes thought of a as a “western” disease, the prevalence is highest in China, which has an estimated 98 million patients with diabetes, according to the IDF, and has become known as the “diabetes capital of the world.” In fact, by 2030 China, together with India, will make up nearly half of the worldwide diabetes population.
However, awareness of diabetes is low in China, so the rate of diagnosis is much lower than the actual prevalence of the disease. Even when patients are diagnosed, they may not be properly treated due to a variety of reasons.
According to data from Kantar Health’s National Health and Wellness Survey (NHWS), nearly half of Chinese diabetes patients stop taking medication if they feel better rather than complete the treatment as advised by their doctors.
With low awareness of diabetes and a large, diverse population, getting insights into these patients can be a difficult proposition.
A sharing culture
Social media can be a good way to connect and educate patients, especially for diseases that people are not well informed about.
Through a social media listening platform, it has been possible to monitor online conversations between large, robust samples of diabetes patients. (Kantar collected more than 275,000 posts covering six healthcare discussion sites in China, including two specialist diabetes communities, over three months.)
Tapping into online postings and conversations reveals unique, unforced and summarized insights into these patients’ day-to-day behavior patterns and needs.
With an online population of over 450 million, 75% of whom are using social media, it is no surprise that China’s patient forums are vibrant.
The Chinese culture of “Shai” (sharing or “showing off” personal details online) means that many patients keep public online diaries, openly detailing their disease challenges. Internet-savvy patients are much more culturally inclined to bare their souls online than they would be in a traditional research setting.
What are diabetes patients in China talking about online?
Diabetes patients in China connect online with not only fellow patients but doctors as well. These patients are hungry for information about their condition and post on a wide variety of topics related to it, which can be broken into three main categories:
• diabetes information: types of diabetes, glycemic index and complications;
• diabetes products: oral antidiabetics, insulin, glucose meters;
• daily life experiences: psychology, diets, exercise, emotional impact.
The majority of patients with diabetes talk about type 1 or type 2 diabetes; 9% are discussing gestational diabetes, with just 3% talking about pre-diabetes.
However, when discussing the features of diabetes, three of four discussions centered around the hallmarks of pre-diabetes: insulin resistance, impaired fasting glucose and impaired glucose tolerance.
Diabetes control is also a big topic for discussion. HbA1C tests are conducted every three months to monitor how well controlled a diabetic’s blood sugar levels are, with less than 7% considered normal among diabetics. Of those patients discussing HbA1C, more than two-thirds have levels of less than 7%, indicating that patients who discuss their condition online are likely to control their condition to stable levels.
Lack of control over blood sugar levels can lead to serious long-term complications, including heart problems, kidney problems, blindness and nerve damage.
Of the online discussions centered on these complications, kidney disease seems to be cause for the most concern, with 42% of discussions addressing kidney diseases such as renal insufficiency, nephritis and kidney failure.
Thirty-five percent are seeking more information about cardiovascular complications, such as hypertension and congestive heart failure, with another 24% are concerned about neuropathy, including numb hands and feet.
Diabetes treatments also feature prominently in these patients’ online discussions, with oral anti-diabetics discussed most frequently, followed by insulin and glucose meters.
Among oral anti-diabetics, Glucobay (acarbose, Bayer) has the highest share of voice, followed by NovoNorm (repaglinide, Novo Nordisk)
Insulin is another hot topic of conversation, with many patients discussing the rapid-acting brands such as NovoRapid (insulin aspart, Novo Nordisk) and Humalog (insulin lispro, Lilly).
The brand discussed most often, however, is the long-acting insulin Lantus (insulin glargine, Sanofi-Aventis).
Finally, patients have many discussions around glucose meters—or the medical device that allows them to test their blood glucose.
From depression to optimism: patients’ emotional journey
Discussions among diabetes patients via social media also reveal how a diagnosis affects them psychologically.
When patients are in the pre-diagnosis stage, many are depressed or confused, and their main concern is receiving a diagnosis of being diabetic. “I keep thinking there is a chance my glycemic level will become normal again,” one patient said pre-diagnosis. Another admitted, “I am very afraid of being diagnosed as diabetic.”
When patients are newly diagnosed with diabetes, they are not only depressed but also anxious and pessimistic; they are concerned about the complications they may experience, having a shortened lifespan or having to take their medication for the rest of their life. “I am afraid complications have already occurred and feel depressed. Does anyone know how long a diabetic can live if well-controlled?” one newly diagnosed patient asked. Another said, “I am really depressed and lost. I will have no future!”
Acceptance of a diabetes diagnosis comes several years after the diagnosis, but patients remain sensitive about their condition. Having taken their medication for a while, they are concerned about the economic costs of diabetes and still fear for the future.
With time, patients who have been lived with diabetes for many years become optimistic and strong. Complications remain the main concern for these patients. “The depression period is gone, and the most important thing for now is to prevent disease deterioration,” said patient with long-term diabetes. Another advised, “Keep a good attitude and always have confidence.”
According to diabetes patients’ online conversations, the one thing that most affects patients’ attitudes toward their condition is their treatment’s efficacy, and they are willing to recommend that treatment to other patients online:
• “At 11 pm I could not fall asleep so I checked my glycemic level — 5.9. Such a good result without an added injection.”
• “I have tested many times after meals, and most are below 6. It is a little unbelievable that it’s even lower than for healthy people.”
However, taking a less efficacious product will make patients feel panicky and helpless and makes them doubt their product. As one patient said, “If I test too often, my fingers will hurt and I’ll use too many test strips. If I test less often, I feel anxious and suspicious. If my glycemic level increases I feel bad. If it decreases I worry about the accuracy of the glucose meter.”
What will you do now that you know what patients are talking about
Traditionally, pharmas are focused on marketing their products to physicians. Patients are largely ignored in the treatment decision, especially in China.
However, as patients become increasingly empowered by social media and technology, they will start to have more of a say in deciding whether to get treated, where and how. Online voices of diabetes patients are an invaluable source to develop patient insights and to bring the best treatment to them.
These online conversations promote patient education and raise disease awareness, so that patients can better manage their condition and this, in turn, can improve compliance.
Inuit co-founder Scott Cook once said, “A brand is no longer what we tell the consumers it is — it is what the consumers tell each other it is,” which underlines the importance of social conversations in making or breaking brands.
Plugging into current trends and conversations helps pharma companies communicate their brands to target audiences
Likewise, if patients feel a brand’s message resonates, they are more likely to seek out that brand and listen closely to what the company has to say.
About the author
Simon Li is Kantar Health’s General Manager, China.