Much has been talked about “patient centricity”, but as yet there isn’t an overwhelming momentum of business as usual patient centred action in the pharmaceutical industry. Some believe that “patient centricity” has evolved into an over used buzzword with little meaning behind it. Others strive to guide the industry towards appropriate and effective patient engagement, such as the survey findings presented in August’s “The Path to Patient Centricity, Closing the How Gap”. However confusion and misperception still remains on the definitions and understanding of commonly used terminology that helps to fuel the dichotomy of opinion on the value of patient centricity.
Patient Centricity as a concept means different things to different people. A common belief in our industry is that of course we are intuitively patient centred as we always put the patient first and think about the patient needs. Scratch beneath the surface and you will often find that those who express this view have never engaged a patient in their day to day working environment.
A common definition of “Patient Centricity” has been developed collaboratively with patients (Yeoman et al. 2017) that provides guiding principles for the pharmaceutical industry:
Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family.
We can derive three core principles from this definition which will drive mutually advantageous and constructive relationships between the pharmaceutical industry and patients that deliver for everyone’s needs:
- be open and sustained
- be respectful and compassionate
- deliver improvements in patient experience and outcomes that the patient/carer wants
Only thinking about patients when developing the next generation of medicines is not sufficient given the public expectation of what “patient centricity” means.
Let’s have a look at other terms that need to be defined in order to establish common understanding:
Patient: the consumer of the medicine. “Patient” is also synonymous with “carer”.
Patient Pathway: describes the sequence of events that the patient experiences from the point where the first symptoms become apparent, through to consultation with a physician, medical examinations and diagnosis, to treatment and post-treatment, perhaps even to end of life. Feedback from some patients to industry’s “patient journey” definition is that they haven’t bought a ticket to go on a journey and prefer the use of the term “patient pathway”.
Patient Insight: information which is the result of understanding the nature of any process related to ‘the patient’. It is about understanding both what happens to a patient and why it happens. Patient insights are generated from both quantitative and qualitative sources to establish the “what” and “why” and enable cross validation of both sources.
Patient Engagement: the patient insight generation process of interacting with the patient according to the three principles defined above. Patient engagement is two way and should enable appropriate and effective information flow between all engaged parties.
Patient Solutions: are tangible tools or services that allow patients to manage their health and assisting them in gathering the skills to become more empowered. An empowered patient is more likely to participate in research, take their medicine as prescribed and achieve a better experience and outcome.
Patient Insights can obviously be derived from health databases and analytical tools, which is a significant and important source. But let’s also explore other sources of insights where you have to actively engage with patients (note that with the advent of new technologies these two areas will overlap):
Patient Experts: individual patient experts who actively engage, share and advise other patients through various social network channels or patients who have additional professional and/or working experience in/of the life science industry.
Lay Patients: first and foremost, every person is the expert in their own condition. No one understands the impact of their disease on their life better than that individual: ‘experts by experience’. But this group excludes patients with additional professional and/or working experience in/of the life science industry and consequently could often be considered less biased than the ‘patient expert’.
Patient Advocacy Group (PAG): an organisation that helps patients navigate through their pathway and lobbies on behalf of patients. PAGs are commonly associated with a single disease state.
Umbrella Patient Organisations: groups of Patient Advocacy Groups who primarily lobby on behalf of all patients irrespective of disease state.
Virtual Patient Networks: can be informal and ad hoc on pre-existing non-medical social platforms or more formal health-related ones.
Also note that individual patients can belong to none, one or all of the above groups with the exception of the mutually exclusive patient expert versus lay patient.
Let’s have an open dialogue on the definition proposals above. So please share, post and comment accordingly. Thank you!