This month’s edition of PME features a number of articles and opinion pieces on diversity and inclusion in clinical trials. Our Director, Su Smith was interviewed as part of a featured article by Danny Buckland examining the changing tides in clinical trials. Danny highlights in the piece that though there are 1,518 COVID-19 studies registered on clinicaltrials.gov, less than 0.3% are collecting data on ethnicity. Su contributes our experience are Origins that there is a willingness within the Pharmaceutical Industry to change attitudes towards clinical trial populations – making them less about academic and clinical outcomes and more inclusive of patient experience and priorities. Origins contribute to this changing attitude by helping our pharmaceutical and medical clients to understand the authentic patient experience. This can help to design more patient-centric clinical trials where the trial participants are more representative of the true patient population (and not just the easiest to access), secondary outcomes are inclusive of patient priority and trial materials and communication are written using the lexicon of those that experience the condition and not academics that have defined it.
Elsewhere in the June edition of PME, Su share’s her thoughts on four key factors that Origins believe can decrease the burden of participating in a clinical trial to patients. The burden of participation is one of the key factors stated as a reason for drop out of a clinical trial and costs the pharmaceutical industry tens of thousands of dollars every year. This cost contributes to the already expensive process of developing and bringing a drug to market and may play a price in the cost of medications. If more can be done therefore to decrease the burden to patients participating in trials, this could decrease the cost burden to payers in future years.
Origins provide actionable patient insights that can re-define your success in clinical trials:
Learning the language that patients use to describe their symptoms and condition ensures that the right/most effective communications and materials are written
Understanding of life with the condition and symptoms experienced will help the planning of protocols (secondary endpoints etc) and logistics that will reduce the possibility of participant dropout – a great financial burden, as well as reducing the burden to patients of participating in the trial
Understanding what could have been improved post-trial, will ensure ongoing learnings are captured and applied
Saturday 19 June is World Sickle Cell Day – it is an opportunity to raise awareness of Sickle cell disease and celebrate all those who live with the condition or are working to support those living with it.
What is Sickle Cell Disease?
Sickle cell disease refers to a group of inherited red blood cell disorders. It is the most common genetic disease in the U.S. An estimated 70,000-80,000 Americans have sickle cell disease and yet there is still relatively little known about living with and managing its symptoms. Origins are currently working with a group of patients in the US to understand what it is like to live with and be treated for sickle cell disease.
Sickle cell disease is inherited from your parents and affects people of many nationalities including Italians, Latin Americans, Greeks, Arabs, and Asiatic Indians. However, it disproportionately affects people of African descent.
Normal red blood cells are round like doughnuts, and they move through small blood tubes in the body to deliver oxygen. Sickle red blood cells become hard, sticky and shaped like sickles used to cut wheat. When these hard and pointed red cells go through the small blood tube, they clog the flow and break apart. This can cause pain, damage and a low blood count, or anaemia.
How can those not affected by sickle cell disease support World Sickle Cell Day and people with sickle cell disease?
Give blood! If you are able to, please donate blood. Sickle cell patients often need multiple blood transfusions to alleviate the painful crisis episodes
Educate yourself – use this awareness day as an opportunity to find out more about sickle cell disease.
Share news with others about sickle cell disease – below are some examples of ways in which sickle cell disease has been in the public arena in the last couple of year
In June 2021 there was a Sky News Daily Podcast episode entitled “Sickle cell: The lives lost and the campaign for change” featuring the parents of Evan Smith who had sickle cell disease and died in hospital at the age of 21 from sepsis. Due to a lack of education about his condition and outdated policy Evan even resorted to calling 999 from his hospital bed. His parents are working with the NHS to ensure that lessons have been learned from this tragic situation. The podcast episode also interviews Dame Elizabeth Anionwu, who was Britain’s first specialist sickle cell nurse.
In May 2020, the podcast ‘This podcast will kill you’ focused a two-hour episode on sickle cell disease. The two hosts (both named Erin) clearly and simply talk through the aetiology and symptomology of sickle cell disease as well as summarising the history of sickle cell treatment and spotlighting the technologies being explored for the future – including the CRISPR gene-editing technology that won the Nobel Prize in Chemistry for Emmanuelle Charpentier and Jennifer Doudna. One of the patient stories featured in the podcast episode is a member of the B positive choir in the UK. The B positive choir first came to the public’s attention on the 12th season of Britain’s Got Talent and is made up of 60 singers who suffer from the sickle cell disease or who have close friends or family suffering from it.
Finally, a few quick facts about sickle cell disease:
There are 100,000 individuals living with sickle cell disease in the US
There are 75,000 annual hospitalisations annually due to sickle cell disease in the US
4 new treatments have been approved by FDA since 2017
2 new therapies are currently in phase III clinical trials
Origins looks forward to raising awareness and increasing understanding around sickle cell disease through our current and future work.
Origins Insights are excited that our ‘What One Thing…?’ short film for Rare Disease Day 2021, made in collaboration with Inspired Films, shortlisted for the 2021 EVCOM Clarion Awards. These prestigious awards celebrate creativity and true excellence across cause-driven corporate films.
We’ve been nominated in both the ‘Health and Wellbeing’ and ‘Innovation’ categories – fitting perfectly with Origins’ and Bedrock Healthcare’s focus and values.
If you haven’t yet had a chance to watch ‘What One Thing…?’, you can find it here.
Well done to everyone involved in producing this film and to our fellow nominees for helping to raise the profile of these important causes.
We look forward to hearing the results at the awards ceremony on the 8th of June.
Last week we received the exciting news that we had been awarded the “Best Patient-Centric Approach” award at the 2021 BHBIA BOBI awards.
As the ceremony was virtual again this year, we weren’t able to carry our award proudly home with us on the night itself, but this week it arrived at our offices. Great timing as we cautiously reopen the office doors for the first time since March 2020.
Our winning entry described our recent pro-bono project “PoTS LIVE”, run in collaboration with PoTS UK and the Royal Holloway University of London.
In a disease area dominated by questionnaire-based research, this project used Origins’ signature ethnographic approach – LIVE (Lives Investigated by Video Ethnography) to understand how Postural Tachycardia Syndrome (PoTS) impacts a person’s day-to-day life, delivering in-depth insights into the patient experience.
The emotive insights gained will be used to inform educational, communication and digital support services across stakeholders. So far this includes a mobile app for patients and educational material for healthcare professionals.
Could understanding the authentic patient experience help you to identify and understand the subtleties of meaningful unmet needs amongst your stakeholders?
Get in touch to find out more about how Origins can redefine your success through patient-focused intelligence.
Origins is thrilled to have been awarded the “Best Patient-Centric Approach” award at this year’s BHBIA BOBI awards. This peer and industry recognition that Origins are the very best at enabling unbiased patient-centricity through the delivery of novel healthcare experience research means the world to us as we strive to set new standards in this important field.
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