Volv Global Blog

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patient experience

Creating ripples

It’s time to rethink clinical trial protocols, and ensure inclusive designs through democratising our health data, in a privacy-preserving way

Credit Photo by Marc Zimmer on Unsplash

It’s time to rethink...

Throughout my career in the pharmaceutical industry managing clinical trials and study programs, I have been confronted with the same recurring problems. Trials struggle to recruit and retain enough patients, they fail to meet target timelines and the vast majority don’t conclude on time.

There are some staggering statistics in the industry, for example, 86% of clinical trials don’t reach recruitment targets in the specified time and 90% of clinical drug development fails.

One obvious reason for these shocking figures is that the pharmaceutical industry overestimates its ability to recruit. But, more troublingly, study design and protocol development seemingly fail to truly reflect patients’ lives, or account for the reality in the clinic.

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Luggage Photo by Caroline Selfor on Unsplash

2021 11 WODC EU Workshop - Identifying rare: The patient journey vs the patient experience

Credit Photo by Caroline Selfors on Unsplash

Over the past year, many of you have joined us on a voyage of rare disease discovery. We have shared the huge challenges facing the rare disease community – from patients and their carers, clinicians and the companies developing life-saving treatments for patients in need.

How those challenges are framed varies depending on the stakeholder, but they boil down to the same issue: searching for, accurately identifying, diagnosing, and treating patients with rare and ultra-rare diseases. The difficulty is compounded by the fact that there are as many as 9,332 unique rare diseases and 21,582 synonyms, according to data from Orphanet.

We have described the ability to pick out patterns to identify patients with rare diseases as being a bit like identifying thousands of constellations of stars: Neither is within the scope of the human eye and both require extremely advanced technologies to even begin to decipher and separate patterns.

Yet to research and develop innovative products for rare diseases, companies must find ways to identify populations of patients for study purposes. And as the millions of patients with rare diseases and their families know all-too-well, the wait for a diagnosis, much less treatment, can be painfully slow, with symptoms often missed or not well-understood by the doctors that they see. Over the summer, we have shared real-world stories with you from patients with rare diseases and conditions or from the parents of children with debilitating rare diseases.

We shared Paul’s battle to get his narcolepsy recognised, diagnosed, and treated and the huge battle he faced professionally and medically. Tamsyn shared her difficult journey with getting the recognition, treatment and support she needed for her rare condition, Poland Syndrome, and how the poor understanding of her condition by healthcare professionals led her to studying biological sciences at university and to her passion for work in the rare disease space. And Bernd shared his story as a parent of a child with Alström syndrome and his battle to get his son, Ben, the support he needs.

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Bernd and Ben's Experience: Alström Syndrome and their intertwined journey on how to live their best lives

Painting called 'The Rain' by Ben Rosenbichler

Rare disease patients and the journey to diagnosis, treatment, and support

For patients with rare diseases and their families, the journey from dealing with symptoms to diagnosis and eventually – where possible – to treatment is often a painfully slow one. Most find their conditions are unknown or poorly understood, that the effect on their lives is not properly recognised or sometimes even dismissed, and that the support they receive is woefully inadequate.

Better patient care, diagnosis and treatment depends on improving knowledge about the more than 9,000 rare diseases and conditions that have been catalogued (at last count on Orphanet, the number was 9,332 unique rare diseases and 21,582 synonyms). Since the human brain cannot keep track of that many conditions and heterogenous symptoms, Volv Global SA believes its inTrigue methodology using AI is another way to profoundly change the patient experience for the better. Alongside this highly scientific approach, it is also vital to understand and record the patient voice.

Over the next three months leading up to the World Orphan Drug Congress Europe 15 - 18 November 2021, Volv Global SA will share the personal journey of some individual patients to specifically highlight the profound knowledge that they have about their rare disease and the wide-ranging impacts such a disease can have on them and their families. These patients and thousands of others like them are the people best placed to help us to make our organisations truly patient-centric.

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Tamsyn's Experience: Poland Syndrome and the problems beyond diagnosis

Rare disease patients and the journey to diagnosis, treatment, and support

For patients with rare diseases, the journey from dealing with symptoms to diagnosis and eventually – where possible – to treatment is a painfully slow one. Most find their conditions are unknown or poorly understood, that the effect on their lives is not properly recognised or sometimes even dismissed and that the support they receive is woefully inadequate.

Better patient care, diagnosis and treatment depends on improving knowledge about the more than 9,000 rare diseases and conditions that have been catalogued (at last count on Orphanet, the number was 9,332 unique rare diseases and 21,582 synonyms). Since the human brain cannot keep track of that many conditions and heterogenous symptoms, Volv Global SA believes its inTrigue methodology using AI is another way to profoundly change the patient experience for the better. Alongside this highly scientific approach, it is also vital to understand and record the patient voice.

Over the next three months leading up to the World Orphan Drug Congress Europe 15 - 18 November 2021, Volv Global SA will share the personal journey of some individual patients to specifically highlight the profound knowledge that they have about their rare disease and the wide-ranging impacts such a disease can have on them and their families. These patients and thousands of others like them are the people best placed to help us to make our organisations truly patient-centric.

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The maze of rare disease diagnosis

Paul's Experience: Narcolepsy and diagnosis - an 8 year odyssey

Photo by Dan Asaki on Unsplash

Rare disease patients and the journey to diagnosis, treatment, and support

For patients with rare diseases, the journey from dealing with symptoms to diagnosis and eventually – where possible – to treatment is a painfully slow one. Most find their conditions are unknown or poorly understood, that the effect on their lives is not properly recognised or sometimes even dismissed and that the support they receive is woefully inadequate.

Better patient care, diagnosis and treatment depends on improving knowledge about the more than 9,000 rare diseases and conditions that have been catalogued (at last count on Orphanet, the number was 9,332 unique rare diseases and 21,582 synonyms). Since the human brain cannot keep track of that many conditions and heterogenous symptoms, Volv Global SA believes its inTrigue methodology using AI is another way to profoundly change the patient experience for the better. Alongside this highly scientific approach, it is also vital to understand and record the patient voice.

Over the next three months leading up to the World Orphan Drug Congress Europe 15 - 18 November 2021, Volv Global SA will share the personal journey of some individual patients to specifically highlight the profound knowledge that they have about their rare disease and the wide-ranging impacts such a disease can have on them and their families. These patients and thousands of others like them are the people best placed to help us to make our organisations truly patient-centric.

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