“Patients should be co-developers of digital health apps”: Polina’s story about fighting disease with health innovations

Polina Pchelnikova was diagnosed with rheumatoid arthritis when she was working in the financial sector and finishing her doctorate in Hong Kong, so she had to return home to the Russian Federation and focus on her treatment. Her struggle to manage her medical condition gave Polina insights and experience that allowed her not only to overcome the disease, but also to amplify the voices of Russian patients, who have a chance to improve their lives with the help of digital technologies.

Polina, who is now actively engaged with charity work uniting patient communities in the country and abroad, shares her reflections on using online tools for patients with noncommunicable diseases.

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Solutions for a better life: health innovations

“I personally not only consult with my doctor online, I use different mobile phone apps and calculators to control my physical condition, keep track of my medication and have access to my online digital medical records,” Polina says.

For patients with rheumatoid arthritis, digital solutions can be a great help. The disease causes inflammation in the joints, typically in the hands, wrists and knees, leading to debilitating pain and a loss of quality of life. But with proper medication, and tools that allow patients to monitor their health indicators, the condition can be effectively suppressed allowing the patient to lead a fulfilling life.

“What is important to remember is that digital tools can’t fully replace personal visits to a doctor’s office. And there are different medical indications [a symptom or condition that makes a specific medical treatment desirable] and contraindications [a symptom or condition that makes a treatment risky] for remote care – some cases can be effectively treated with the help of digital tools, and others are just not suited to them,” adds Polina.

Innovative does not always mean effective

Polina talks about her personal experience: when the disease is at the remission stage, it is very convenient to control her physical condition using mobile apps. But when inflammation returns, digital technologies alone do not provide a solution.

“At such times, I can’t move normally because of pain and I need to change my treatment process, so my health professional has two options: he can either schedule a personal visit with me because it is not possible to amend the treatment online, or he can try to give recommendations based on the digital information he has. These situations are always confusing. It would be great to have concrete guidelines approved by health authorities that doctors could use,” she explains.

Digital technologies are still an emerging area for the health sector in the WHO European Region.

In 2010, when Polina was diagnosed with her disease, she did not know of any effective digital tools aimed at helping patients with rheumatoid arthritis. Eventually, 4 years after her diagnosis, she found and downloaded the first app that focused on her condition. At that time there were only English versions available, and it took more time before the technology became fully localized for Russian patients.

Eliminating digital inequities

Today, Polina is still aware of the lack of literacy in the field of digital tools – not only among the patients, but among health professionals as well. This is also related to a lack of trust in innovative solutions among the general public.

“My grandpa wouldn’t have any access to online health-improving solutions if I hadn’t explained how these tools work. There are almost no sources of reliable information on digital opportunities for patients today, and doctors are reluctant to explain the new digital opportunities to their patients.”

In this context, health literacy is closely connected with data security and access to digital tools. Choosing a digital tool, patients should have a clear understanding how their health data is going to be used and stored in order to trust the technology.

“I think the main risk is that technologies could widen the health inequity gap. For those who can use digital tools, access to quality health care will only improve. For those who don’t have this access, there would be even fewer ways to access professional health services,” she added.

This problem is addressed in the WHO European Programme of Work 2020–2025. The document not only endorses digital transformation in health, but also encourages reducing health inequalities in all countries of the WHO European Region.