Updated: Jul 31
There is no universally agreed definition on what a patient advocate is. As the term is not protected- unlike most professional titles- anyone can call themselves a 'patient advocate'. So it is hardly surprising to find different concepts under the same umbrella term:
In the broadest sense, we see professionals who are not patients themselves advocating for what they perceive the interests of patients are, e.g. within their company or their hospital. Often, these people are passionate about ensuring that a patient's perspective is taken into account throughout any process directly or indirectly affecting patients and there is an obvious relationship to user-centric design.
In particular in the US, the term patient advocate is used for a person supporting a patient in their treatment journey, something that Europeans would probably call a 'navigator' and a function that is often assumed by family members or close friends.
Self-organising patient communities
In Europe, patient advocacy most refers to grass root self-organising patient communities and NGOs that provide direct support to patients and drive system change. The term patient advocates is not uncontested as it revokes a legal connotation in some European languages. Alternatives are 'patient representative', a term disliked by others as establishing true representativeness in a situation where the ambition is to do right by the individual rather than the group, is difficult if not impossible. Also in use is 'patient activist', liked by those who want to see action and system change and disliked by those who associate activism with throwing bags of paint. As this is the community we belong to, the rest of the post will focus on this understanding of patient advocacy.
One of my first tasks as chair of the ESMO Patient Advocacy Working Group in 2015 was for us to come up with a definition of a patient advocate. Despite us all identifying as patient advocates, this turned out to be surprisingly difficult. The end result was a pragmatic 'good enough until we find a better' version distinguishing patients, patient advocates and patient advocate experts.
The critical distinction is however that a patient is concerned with her or his own condition. A patient advocate has expanded her or his circle of concern to a larger group of patients.
We in MPNE then developed that model further, adding the category of 'patient experts'.
These 4 categories differentiate across 3 different domains:
- disease experience
- group perspective
- technical expertise
The domains in detail
Obvious to anyone who has been affected, non-obvious to most who have not. A cancer diagnosis is a life-altering experience the degree of which is routinely underestimated by non-affected persons. Also, specifics matter- the experience between being diagnosed with an early or a late stage cancer differs significantly, as well as being the patient or a carer. In our work with the EMA that you will find published here, we have picked up considerable differences between patients, their carers and advocates who were not directly affected by the condition.
While the numbers were too small to draw any reliable conclusions, we have since then opted to simply ensure that for critical discussions, such as input into regulatory or HTA (Health Technology Assessment) decisions, those who are directly experiencing the situation in question should have the main say.
Every patient experience is valid. Some experiences are unique, while others are widely shared. Being able to reflect on one's own perspective in relation to the wider patient community and to act upon it appropriately is therefore an extremely valuable skill. Patient communities are extremely sensitive 'sentinels' that often pick up issues- such as side effects or problems in the healthcare system- before they become common knowledge. In these cases, even a single report can be highly informative. On the other side, questions like 'what worries patients most' will be very group-specific. E.g. colleagues taking care of online patient communities often have a very detailed understanding of the various concerns- topics that affect everyone and topics that particularly affect subgroups.
As stated above, patient advocacy is not a regulated profession. While some of us exert it now in remunerated positions and as our profession, there is nevertheless no unified pathway- maybe apart from a personal experience with the disease. This means that all advocates, in addition to their advocacy expertise, also have another distinct- and diverse- professional background. For many of us, the experience with cancer has changed our perspective on our profession profoundly and we have developed deep expertise in that specific intersection of our profession and patient advocacy. As much as it is deep- it cannot be broad, so if particular- such as legal or medical or scientific or business- expertise is required, knowing how to identify that specific patient advocate is critical. By the same token, also lack of expertise can be important. If one e.g. wanted to develop accessible material for newly-diagnosed lay patients- the material should be tested on that very group, not on someone who already comes with considerable background.
Rather than absolute categories, these domains should be understood as guidance. In our experience, the absolute majority of failed patient involvement does not stem from lack of interest or bad intentions, but comes from the fact that there was simply the wrong person in the room.
Reflecting on and being intentional about the type of perspective and expertise required is therefore an important step to ensure mutually beneficial encounters.