Beyond the Hype: What Patients Really Think About Digital Healthcare

Addressing intractable diseases that have plagued patients for years requires the combined efforts of physicians, patients, new technologies, and social media.

In all discussions related to healthcare, patients remain the most important stakeholders. Therefore, digital innovations such as “digital physicians” must aim to assist those in need, rather than pursuing innovation for its own sake.

No one is more qualified to speak on this matter than Michael Seres. As an “e-patient,” he has recently been passionately sharing his experience, highlighting how new technologies and social media have helped him manage his illness and reclaim his life.

Michael was previously diagnosed with Crohn’s disease (also known as regional enteritis), and his condition has been steadily deteriorating. After suffering from intestinal failure, he underwent a small bowel transplant. Now in his forties, he faces the likelihood of lifelong medical surveillance, requiring continuous monitoring and care from physicians and nurses, as is common for many patients with chronic conditions.

When discussing the concept of the “PME Digital Physician,” Michael stated, “For me, digital health technologies play a pivotal role in disease management. In my view, social media and communication tools such as Skype, text messaging, and email are just as important as physicians in hospitals and my clinical records.”

He recalled, “Starting in 2013, the hospital that performed his transplant surgery began using Skype, enabling face-to-face communication between patients and doctors over the internet.”

Michael stated that this approach is incredibly convenient and efficient for patients with chronic conditions. “After using Skype, I no longer had to endure a 90-minute car ride to the clinic every day to see my doctor,” he said. He added, “Later, the hospital sent my blood test results via text message. Of course, the hospital obtained my consent before doing so. This method has allowed me to manage my condition as effectively as I manage my life.”

“In our daily lives, we are constantly using new technologies such as text messaging. So why can’t we apply them to healthcare? Take an example I learned from a blog: with the intervention of new technology, four patients successfully underwent transplant surgery without their medical teams’ knowledge.”

Physicians and Social Media Platforms
In Europe, an increasing number of physicians are beginning to use social media platforms such as Twitter and Facebook, as well as physician-only websites like Doctors.net.uk and healthcare professional communities such as Sermo, all of which have been expanding year after year.

Secondly, although it is only a temporary phenomenon, doctors now hope to provide more online consultations for patients. According to Michael, this can lead to better treatment outcomes.

He said, “It took considerable effort to convince my attending physician of the value of Twitter. To this day, he occasionally uses Twitter to inform me of my test results. He also consults with many other patients on the platform, enabling them to engage in direct online consultations with their doctor.”

“Now, I still frequently use Facebook to consult with them.”

However, this remains a minefield for some physicians. Michael remarked, “There is still a clear divide between doctors and patients, one that patients are not permitted to cross. Therefore, when certain patients persist in discussing their medical conditions with their physicians, such behavior is truly commendable and deserving of respect.”

“Of course, not everyone is accustomed to using social media. But if online consultations can do everything that in-person visits can, why wouldn’t we use them?”

Digital Adoption

Michael has always believed that cultural differences persist in the adoption of new technologies in the UK and Europe. However, he is convinced that European patients are even more eager to use social platforms for healthcare consultations than their counterparts across the Atlantic.

Meanwhile, in the United Kingdom, even though this technology has been integrated into daily life, the pace of public adoption remains astonishingly slow. It is still uncommon for patients to email their primary care physicians or send them text messages for consultations. This raises a critical question: if we do not even utilize these tools, why should we expend significant effort on developing new technologies?

“In other words, we were the first movers in the UK, and this was all achieved through the tireless advocacy of patients. While the British may be willing to try new things, they are more conservative than Americans when it comes to widespread adoption.”

The Role of Online Networking with Pharmaceutical Companies

When it comes to medications, Michael expressed his desire to engage in online discussions with pharmaceutical companies so that he could obtain more information about the drugs he is currently taking.

He explained, “In any conversation about healthcare, pharmaceuticals always play an important role. For me personally, I hope they can also be involved when I discuss with doctors which medications I should take.”

“In this way, they can gain insight into the real-life experiences of patients taking their company’s medications. Only by truly understanding and engaging with these patients’ perspectives will they be able to engage in more meaningful dialogue with them. I am not concerned, nor have I ever been, that the commercial interests of pharmaceutical companies are incompatible with patients like me.”

“As long as pharmaceutical companies concentrate their resources on developing better drugs, profits will naturally follow. The medicines they develop may save patients’ lives or enable them to enjoy a better quality of life.”

Compiled by Zhou Changling | Edited by Mo Renying