If there is one thing that is a constant throughout my professional life , it is the “cri de coeur” around the importance of involving patients in the design of new digital solutions and other new therapeutic interventions. In reality however, the changes that have taken place are not quite as fundamental when taken in the context of where they are happening. As we know change is now everywhere and accelerating.

So what needs to change and why?  

Health care has evolved from episodic care to lifelong approaches to care and in this context the patient has now become the person as care needs to be extended to the presymptomatic phase – the time when one is not yet a patient but is trying to better manage risk factors to minimise their effects   This implies the input outside the healthcare system which is where the majority of care takes place in these presymptomatic phases has increased in importance and the input of the person, who is self-managing their health, becomes more pronounced.

Also we need to become clearer around our definitions.   We tend to bandy around terms like “engagement” and “involvement” and use them interchangeably when in reality they have very different meanings.   Both are critical components to the development of digital solutions but they refer to different aspects around how patients or the person is incorporated within deployment.

Involvement generally refers to the inclusion of patients as active contributors in the development, decision making, or evaluation processes of healthcare services or solutions.  Engagement on the other hand, focuses more on how patients and the person interact with and use digital health solutions once they have been deployed.    These two definitions are by no means the only ones that exist.  Some people define engagement as merely ensuring a box is ticked as patients or the person have been asked about what they think about a new solution – and I am stretching an approach just to make the point that we need to define what we mean by these words and how we use them.

We also need to standardise our approaches to managing this aspect of care.  There is no doubt that engagement and involvement improve outcomes as people tend to use the products more and in a more productive way and it is also clear that the earlier one involves people in design, strategy and deployment, the more likely it is that outcomes improve.   We still do not however have developed commonly accepted standards around this in the pharmaceutical industry as well as in digital health. There are attempts to standardise but it is time we took this more seriously as health care is now evolving too fast for us to delay.

This will be a topic we also will address at our festival in Helsinki – a topic that needs addressing and a topic where it is critical to be radical if we are to see the changes to care we all aspire to.

– Dr. Charles Alessi,
Chief Clinical Officer of éditohealth and Steering Committee member of Radical Health Festival