aHUS Patient Centricity

Article No. 298

18 November 2019

A change is coming in the relationship between patients/ patient organisations and Pharma. This  change is inevitable as a response to the need for patient centricity in its behaviour. This is evident too in what Alexion is saying and doing these days.
Patient centricity is perhaps an easy thing to agree to have, but difficult to define and implement for Pharma, patients and their organisations. There are lots of articles on the subject, frequently based on an academic research involving patients from all sorts of backgrounds.
One of the simplest explanations of patient centricity has been given by the Patient-view organisation in the U.K. As always these concepts are turned into models to build strategies around. Patients-view  identified 9 attributes in a framework of Patient Centricity. These are
“Beyond-the-pill” programmes that support the patient journey.
Pricing policies, research results and funding relationships
Patients are engaged and their opinions sought in each stage of R&D
Consistent , current , balanced and usable
Effective governance, communication  and training
Reliable supply and effective patient safeguarding
Effective policies for all patients ( regardless of location , disability or access to funding)
Products that provide real value to patients
Actions that demonstrate a culture of high integrity

Patient-view Framework of Patient Centricity.

Readers will no doubt recognise the objectives/activities  that underpin these attributes. They are the kind of subjects which have featured on this website over the past three and half years.
It is one thing saying them and another thing doing but some of these activities are already happening in the aHUS Pharma interface.
Many individual aHUS patients have had a  singular contact with Pharma , mainly Alexion, already,  as have patient organisations too.
Recently Alexion invited an aHUS patient to talk at ASN Kidney Week about his experience of aHUS. What he said is not known but what he did featured in Alexion’s social media output.
What individual patients say is up to them , it is after all their own encounter with aHUS.
Similarly national patient organisations can  have a collective  story of aHUS in each country.
aHUS is seen increasingly as a spectrum of occurrences within a spectrum of TMAs.
One case story is not enough for policy decision making at a global level.  So that’s when it becomes harder.
The capability to express a global aHUS voice across the framework of patient centricity and towards multiple Pharma corporations  with an interest in aHUS , is going to be challenge. A challenge which will change the nature of patient advocacy going forward. Even with full collaboration of all its affiliates the aHUS alliance capacity may fall short. The need to work smarter with focus is paramount.
The aHUS Patient Research Agenda is an example of how a global aHUS voice can be orchestrated from hundreds of voices. It took four years to do. But matching  that Agenda with the Framework  of Patient Centricity is a good start. aHUS patients want a say in research , believe that global drug access is inequitable and value what matters to them beyond-the-infusion too.
Global aHUS patients collectively must have the chance to say more in concert.

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