Powering Patient Participation #FoG2020

Day two kicked off with a keynote panel discussion on Powering Patient Participation in R&D- and Why you need us. Three great speakers from different angles discussed the immense advantages of companies using patient voices and experiences in their drug discovery and trial development processes.

First up… Patrick Short, the CEO and co-founder of Sano Genetics.

New Medicines need patients.

Patrick talked about his own experience of genetic conditions within his family, where affected males have a serious kidney condition that eventually requires kidney transplant. Patrick’s company ‘connects people with research in personalised medicine’ he talked of the ambition to equip every biobank and genomics initiative with a digital platform to enter patient data and information. Patrick raised the importance of patient-centric research within precision medicine and the access issue for patients to see how their data is being used and for them to control consent of their own data.  He talked about the advantage that software can have in connecting patients to researchers.

He also hosts ‘The Genetics Podcast’ where he explores all things genetics.

Next up was Jillian Hastings Ward, Lead of Genomics England Participant Panel.

It is always a pleasure to hear from Jillian, she had such an instrumental role in providing a patient voice to the research and data storage of the 100,000 Genomes Project.

Jillian has a son who was found to have a GRIN gene disorder through the 100,000 Genomes Project. Since this discovery, she has become a board member of the CureGRIN charity which aims to help identify other children with similar disorders and to fund research into a cure.

She reminded a room full of clinicians, scientists and researchers about the impact of the words and language they use on reports, letter and in clinic and how families can be left feeling disheartened that a great problem for them can often be summarised as just one word on a piece of paper. She gave an example of the phenotype ‘Sleep disturbance’ which could be interpreted as a small side effect by clinicians but for families that are kept awake night after night this may be one of the biggest impacts of their loved one’s condition.  Jillian talked about the insight that families with genetic conditions have and how they can add value to research.  She reminded Health Care Professionals that patient representatives can help them focus their research and to advise which procedures and side effects are acceptable and which are deal-breakers.

Patients can help us get the full picture- what could they do for you?

Jillian also spoke passionately about how families can work alongside HCP’s to help provide more information on their children’s phenotypes including the environments where their phenotype is more severe which can and has previously helped with diagnosis.

The CureGRIN charity has just received a Chan Zuckerberg ‘Rare as One’ grant to fund research into single gene GRIN disorders. Jillian ended with a Quote from the Chan Zuckerberg initiative

Patients know their disease better than anyone else.  They can help advance treatment and cures and are the secret sauce for successful research and biopharma partnerships – Chan Zuckerberg  

Finally, Fiona Copeland spoke from the PCD Family Support Group

This was a very practical session where Fiona described the advantages and the logistics of incorporating patient ambassadors into research. Fiona has a husband and two children affected by a rare condition, retinitis pigmentosa and primary ciliary dyskinesia.

She was very knowledgeable on genetics but emphasised the other skills that she brings from her professional work in a project management capacity and also her experience as a mum. She brings her varied life experience and a different perspective to meetings where drug development or research targets are discussed.

Move forward to patient engagement- it’s the future.

Her main points are summarised below:

 How to recruit patient ambassadors:

  • Find someone with a genuine interest in helping you achieve your research goals

  • Invite them to your meetings, making sure they are included and that their opinions are valued

  • Offer them training – often people want to help but might not have the right tools needed to get the best out of them – maybe they need a beginners guide or an informal chat with the PI of the study to explain things to them in more simple terms

How to work with patient ambassadors and get the best out of them:

  • Provide clear and easy to understand information, ask them to help you work on the patient resources and check you have pitched at the right levels

  • Review experiences- the positives and negatives and what you can learn from these

  • Recognise, record and celebrate people’s contributions. 

  • Give continuous feedback so people feel they are valued

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With any Whole Genome Sequencing (WGS) test ordered, a Record of Discussion (RoD) form will also need to be submitted. This document is to record the patient’s consent for genomic testing and their choice on taking part in research. Guidance on the patient choice conversation can be found here
 
This RoD form will be available for clinicians to download from this webpage. Once completed with the patient, it can be send to the lab with the corresponding test order form and sample.
Tests available to order will be listed in the National Genomic Test Directory. A test order form will soon be made available for clinicians on this webpage to download and complete. This form will include the address of the laboratory that the appropriate sample and completed form needs to be sent to.
 
Until the new Genomic Laboratory Service goes live, please continue to follow existing test order processes.
 
Later this year, the online test ordering tool for Whole Genome Sequencing will be integrated into the National Genomics Informatics System (NGIS) and clinicians will be able to search or filter to find a clinical indication, confirm eligibility criteria and start the test request process for their patient.