DIVERSITY, EQUITY & INCLUSION
History of patient centricity and patient and public involvement If you look back through history, the majority of the time the person experiencing the affliction led the way with their medical care as they described their symptoms to a trusted person within their community. They then tried out what that trusted person suggested and decided if it worked or not, informing them of the outcome (if they lived). The trusted person would then gather insights that would hopefully make the next time they treated another member of their community more successful. However at the heart of this interaction was community trust. In our modern day societal version of this,
community trust has been lost. This was the motivator for the first patient involvement activities to spring up as a grassroots movement in the 1970s. People in the UK with disabilities lost trust in the research that was happening and impacting their lives and so proposed a model that equalised their relationship with researchers, making them empowered patients instead of research subjects. All other involvement models since have
requested the same recognition. However, putting the patient on a central pedestal is not honouring this request. It’s still utilising the us and them aspect rather than recognising the collective position, without all stakeholders no progress will be made. We don’t want the youngest child to walk away from the game.
The stakeholders and their values To bring my concept of mutual investment to life I am going to venture away from the usual titles to help underpin the different values that each trusted stakeholder group in our community can bring to the table. There are going to be some mavericks that fit within all three groups and can wear whichever hat fits best, multiplying the value output. Also the values I have listed are not exhaustive, I have only identified the most apparent and visible values.
Lived experience experts: Primarily these are people who are diagnosed with a specific medical condition, their partners and family members. Also included in this group are friends, advocates and patient organisations who work with individuals within the identified
health community. The value this group brings to the table is not only of individual daily lived experience of the condition but also the collection of those individual voices into a mass of intelligence and insight.
Healthcare support and delivery experts: Professionals working in medical healthcare systems across the globe and individuals working in paid care delivery systems. These individuals have collective knowledge of what they have observed in the professional setting they work in as well as their professional training and accreditation. The value this group embodies is clinical
expertise, understanding the challenges within healthcare system delivery and innovation, and global networks of shared knowledge with professionals peers.
Treatment discovery, development and tracking experts: Collected within this group are pharmaceutical industry personnel, health tech developers and academic researchers. This is a large range of people however the main focus for the collective output from this group is new treatments, technology or discoveries that will improve health outcomes. The value output from this group is
understanding the global market, scientific, technological, research methodology, licensing and governance expertise, and money.
Lived experience experts
High quality
research and healthcare outcomes
Healthcare support and delivery experts
Treatment discovery, development and tracking experts
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