Digital Health and Health Data Sharing – are patients involved in innovation? (Guest blog)

I think you would agree if I say that the train of digital health is unstoppable. Digitalisation has entered the healthcare area a while ago and digital health solutions can have a lot of benefits for patients. Digital health can help manage a disease, assist in areas like taking a medication or doing physiotherapy. It can help collect safe data and support R&D to find out more about diseases and develop therapy options.
Over the last two years digital health has grown tremendously. Start-ups and industry started to develop more programs for patients, we talk about health data sharing, creating frameworks like the European Health Data Space and much more. The patient community welcomes these activities, because they can have a positive impact on our life. But very often there are three issues missing: involvement, information and trust.
It's all about information and trust
At the moment, we can observe a huge gap of communication and information in the area of digital health. Experts often use technical jargon and of course they understand each other as they are in their natural surroundings. But have you ever asked citizens if they understand what was said? I bet many of the people would say no.
Information is key. In every aspect of digital health. For patients like me, citizens and, of course, experts. We need more information and education to use digital health solutions properly. People have to be enabled and empowered to trust digital health and make valuable decisions. If there is no good information, there will be no trust. It’s simple. When people don’t know something about a “product” they will not use it. If a person is informed, an informed decision will be made. There is trust too.

Mostly on the patient side digital health very often takes a “trial and error” approach. Patients look for solutions to make their lives easier and improve their quality of life.

At the moment trial and error happens because of the gap of information and trust. As someone living with a chronic disease, I have MS, I know how it feels when you try to find a solution to solve a disease-related problem, but you don’t have any or very little information. You try, but you don’t use things in a well understood manner, you try and hope. Therefore, good communication and information is essential to bring people on board, activate and empower them to use digital health, give feedback and be heard.
Let’s talk about involvement
When it comes to bringing a new lifestyle product on the market, such as shoes, cosmetics or a new sensational fitness tool, consumers are involved in the design process at an early stage.
The reason for this is that these people are the ones who will use that product, meaning they decide if to buy it or not. It’s important to have them involved to grow reach, positive reputation, trust and build a community who will buy the product.
When it comes to involvement of people or patients in the early stages of development of a new digital health solution or to find ways how to share health data, this is totally different. Very often involvement of patients is missed. No matter if it is an App, a disease specific solution or policy.

Over the last years I heard a lot of reasons why patients are not so often or intensively involved in the development of digital health solutions or health data sharing. Starting from “oh, we have statistics” to “how should we involve people, we have so many rules” and the newest “Patients can’t do this job, because they don’t know it!”
Well to answer that, a statistic gives basic information about a consumer group, but it is numbers, not people. It doesn’t necessarily say what a patient (aka consumers) need and I can confirm that the legal frameworks are actionable when it comes to patient involvement in an early stage of development. Collaborating with patients works. Patients may need additional information or instructions, but don’t we all need a briefing before doing a job?
Involving patients in the early stage of development of a digital health solution is important. Because these tools are made for patients. They live with their disease every single day and know the difficulties. The final decision must be done by the experts, but not without having heard all thoughts and concerns from the public and patients. Don’t miss that essential voice as these people have to deal with the solutions!
As a digital health and patient expert commuting between the experts and the patients, I can see those gaps and issues, but it is worth bringing everyone at the same table to exchange information and move forward together towards better digital healthcare and better patient involvement.

Birgit Bauer

Birgit Bauer, Social Media & Digital Health Expert, Patient Expert, Journalist, Speaker Birgit is German and...
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