Insights from the fifth Annual Patient 360° Summit: How can digital Healthcare be improved to better help Patients?

Our digital health experts, Caoimhe Vallely-Gilroy, Johanna Weibel, and Christian Wickert shared the latest updates on what EMD Serono been doing in this space and in turn, insights were shared by patient advocates. This feedback will be instrumental as we look to continue to develop and expand our digital services.

As we consider how technology could, for example, support self-administration of cancer treatments or treatment adherence among people with multiple sclerosis, we must engage patient and carer organizations to understand how best to achieve such goals.

To spark the conversation, and as part of our commitment to becoming a patient-directed healthcare company, we facilitated our fifth annual Patient 360° Summit Meeting in December 2021. This is an incredibly valuable opportunity for us to listen to patients and family carers to understand their digital health needs and challenges.

From last year's meeting, it emerged that the COVID-19 pandemic accelerated several digital health innovations, including mass adoption of telehealth, e-prescriptions, and virtual training sessions, to name a few. However, we know that there are many untapped opportunities to optimize digital health solutions. Patient advocates expressed that often digital services were inaccessible and not designed with a patient or carer in mind.

Armed with this insight, in 2022 and beyond, we are committed to trying to address how our digital patient offerings can:

• Allow patients to have control of and easy access to their health data
  
• Be co-created with patients and carers from start to finish  
  
• Be easily understood by patients and carers
  
• Consider the entire disease/treatment journey

And here’s why…  

Health data must serve a purpose and be accessible to the patient

Many patient advocates commented that they are happy to share their data, including for research, as long as they believe it is genuinely useful for helping others. A key principle for EMD Serono is trust and transparency. That’s why, when developing digital solutions, we make it abundantly clear how data are used and shared and why it is being collected. Further, digital solutions that request data always have a legitimate and relevant purpose and serve to advance healthcare.

Beyond that, patient advocates expressed a want and need to access to their own health data, which can often be cumbersome or spread across multiple platforms. Such data can be used to help keep a track of their health, for example, symptom progression or knowing the time since their last imaging appointment. If these data were held digitally, and in one place, it would benefit both the patient and the healthcare professionals during consultations if they could easily access a patient’s health data across their entire care pathway. Armed with this information before entering a conversation with their doctor, it can facilitate a productive dialogue instead of an emotional one. All patient advocates agreed that many of the currently available health-related apps do not make up for this and do not provide the personal level of information needed.

Delivering on our promise of patient-directed care

A fundamental principle for our organization is co-creating innovative health solutions with patients and carers, for patients and carers. The importance of this was echoed in the summit meetings with many attendees expressing that digital services must be genuinely needed, relevant, and easy to use and understand. As part of our patient-directed approach, we are committed to putting patient and carer voices at the center to help shape and design the way we deliver healthcare, from idea inception to development and optimization. This approach also means the language we use is most likely to be understood by patients and carers – helping us build trust and encouraging uptake.

These insights also help us deepen our commitment to move away from a one-size-fits-all approach and towards one that recognizes heterogeneity both across and within diseases. This ethos must extend to our digital solutions. That is, much in the same way that no one-size-fits-all, no one-digital-solution-fits-all, either. As we heard in this year’s Summit, patients and carers want holistic apps that capture their genuine, multiple, and differing needs, providing support from diagnosis onwards, moreover, how a diagnosis or treatment impacts a person’s mental and physical health will vary over time and must also be considered.

These nuances impact how and why each person initiates and continues to use digital health services. As such, personalization of care, that recognizes patients as humans, will remain a key pillar as we continue to advance our digital health solutions.  

What are the next steps for our company?

The most recent Patient 360° Summit Meeting reinforces our commitment to be a patient-directed healthcare company. The learnings and insights we gained from this meeting have been invaluable and we are deeply thankful to all the patient advocates and carers that participated.

After the Summit, Hazel Moran, Head of Global Patient Insights & Advocacy EMD Serono commented “The depth and diversity of feedback from patient group representatives at this year’s meeting was astounding. Our job, now, is to turn these visionary comments into a reality. By ensuring that the patient voice is embedded in every stage of our digital services development, we can shape digital solutions that genuinely improve the lives of patients and carers.”

In 2022, we will seek more opportunities to build on these insights and engage further with our community – patients and family carers - as we expand and optimize our digital health strategy.

Together, we are United As One for Patients to help create, improve, and prolong lives. Patient-directed digital services will be a cornerstone for achieving this.