FH 2021: Citizen and Patient Empowerment

Citizens and patients worldwide are aiming to collaboratively create human-centric healthcare. This democratization of health requires that both patients and citizens become knowledgeable and take responsibility for their care.

During the recent Frontiers Health Conference, a virtual panel focused on how current technology advancements enable patients – and all consumers – to better manage, co-design, and eventually take action in their healthcare decisions.

Digital health transformer Nana Bit-Avragim (EIT Health) moderated the discussion with a patient-entrepreneur and mission-driven leaders in consumer health, biotech, and AI ethics, including:

  • – Shiva Amiri (23andMe)
  • – Dawn Barry (Luna DNA)
  • – Maneesh Juneja (Digital Health Futurist)
  • – Maria Palombini (IEEE Standards Association)
  • – Roi Shternin (The Patient School)

What Could Change in the Current Healthcare System

Digital health technologies are evolving at the speed of light and are being even further accelerated by the COVID-19 pandemic.

Regardless of the differing situations in various countries, current healthcare systems are often based on assumptions and still not adequately focused on patient and citizen needs.

There are 3 keys to changing this:

Human experience: We tend to forget who the end user is. Patients are human beings, not just a set of pathologies.

Trust: The pandemic challenged the balance between all healthcare stakeholders. There is a strong need to improve communication amongst them. To establish a healthy relationship, we need to ensure that the conditions are optimal for everyone to interact in the most appropriate and efficient way.

Simplification: One of the main barriers to democratizing health is the overcomplication of processes. Everything needs to be easy to access, understand, and use.

The Patient Will See the Doctor

The issue of miscommunication between patients and HCPs is one of the main underlying concerns with the patient journey. Two fundamental needs in addressing this challenge have emerged above the rest:

On one hand is educating stakeholders to understand how both patients and HCPs behave within the system. On the other hand is empowering patients, who frequently do not have advocates on their side.

It seems that our perspective is shifting from “the doctor will see the patient” to “the patient will see the doctor.

Health Data Ownership and Value

Consumer business has grown exponentially and will continue growing. We are collecting great amounts of data that are provided by patients themselves. Patients are increasingly asking for the right to own and control their health data. But data are not static, physical objects. What is really needed, and what we should all be trying to achieve, is empowering patients to use their right to access, manage, and transact health data and medical records with the appropriate transparency, much as they do with their financial data. Data are the new oil, but it’s ineffective to merely buy data…the industry first needs to give value to patients. In addition, simple access to medical data and test results frequently offers no real value to patients when lacking in context.

According to Luna DNA representative, it is reasonable to assert that the enablement of inclusive and participatory health research will be recognized as a result of modern data privacy regulation rather than the current misbelief that individual data privacy will impede needed health research.

Data are certainly an outstanding patient resource, but minus the proper context, they end up being unusable. Rather than siloed or isolated data, it is becoming clear that the real value component to patients is insight. Artificial Intelligence will play a significant role in easily retrieving new insights in automated ways. On the other side, patients should be increasingly involved in the design of new solutions from the beginning.

Empowered Patients and Science Research

During the COVID-19 pandemic, the majority of human activities have been digitized and performed remotely. One consequence of patient empowerment is the accessibility to a larger number of tools, which can also be used to study personal health data. Many patients have created groups to not only receive social support, but also to perform bottom-up research (patient-driven research). Electronic patient-reported outcomes are becoming increasingly vital to all phases of care, as explained by this Digital Health Italia article (only available in Italian).

HCPs generally don’t trust this kind of research, but it should be considered that while HCPs are experts in identifying diseases, patients are the experts in experiencing them. Once again, patients are people, and they can also educate HCPs since doctor-patient communication is a two-way street.

What Do We Envision in the Next Two Years?

Patients are going to propel discussions with HCPs. Despite resistance from so-called “medical paternalism,” it seems plausible that the healthcare system will evolve more and more in a direction that is not only patient-centered, but patient-driven. Patient communities are emerging and evolving, positioning themselves as new players in the healthcare scenario, but for purposes of advocacy, not merely for chit chat.

The next generation of healthcare will see a co-creation process with patients and citizens, based on and designed around patient needs in order to lead to real results.

Authors: Roberta Milano, Account Executive at Healthware International, Davide Pistorio, Account Executive at Healthware International

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