PMF Patient Week 2021

A Summary of our Patient Week discussions on March 8

Our inaugural Patient Week event began yesterday and we are thrilled that so many people joined us for the discussions. There were many important questions asked and answered during the session.

At 2pm GMT our first panel discussion, Precision Medicine – Catch 22?, took place. The experts that joined us were:

Dr Bettina Ryll, Founder, Melanoma Patient Network, Cancer Mission- board member, European Commission 

Euan Ashley BSc, Professor of Medicine & Genetics, Associate Dean, Precision Health, Stanford University

Dr. Volker Liebenberg, Medical Director EMEA, Illumina

Anne R. Pariser, M.D., Director Office of Rare Diseases Research, National Center for Advancing Translational Sciences, National Institutes of Health, DHHS

During this fascinating talk, our speakers delved into the complexities of trusting the implementation of Precision Medicine across research, clinical trials and healthcare.

It was suggested that it is critically important that we ensure the protection of patient’s data, unless they waive their right to anonymity in order to use their data to benefit the greater good.

In this instance, it was referring to those who have a rare disease and are trying to find ‘someone like me’. Without being able to share their data, they would be unable to find others who have the rarest of diseases to enable them to get personalised treatments.

Dr. Euan Ashely, of Stanford University, said: “Most of the time we have to keep private and secure information. But the power needs to be in the hands of the patients, so that if they need to they can share their data very broadly.”

Our second session began at 3:05pm, and our speakers were discussing, Are Patients the Missing Part of the Drug Development Puzzle?

For this talk, these were the individuals who joined us:

Rita Magenheim MD, Physician, Researcher, Patient Advocate

Ella Balasa, Cystic Fibrosis Patient Advocate

Begonya Nafria Escalera, Patient Engagement in Research Coordinator, Sant Joan de Déu Children’s Hospital (Spain)

It’s increasingly important that patient’s are involved in the research and regulation elements of Precision Medicine.

This fruitful discussion highlighted the need for transparency and collaboration between all stakeholders to ensure the successful development of new drug treatments.

In order for collaboration to happen, gaining the patient’s trust when doing clinical trials is critical. There were issues raised with the cost involved of patient’s attending clinical trials as well as how they are typically voluntary positions. The panelists were speculating that this could be solid reasoning for why there are such disparities in healthcare.

If you’ve missed any of the sessions, you can watch them on demand by registering here.

Thank you to all speakers who joined us on March 8th, as well as the audience who asked many brilliant questions.

If you would like to see any of the studies shared by the panellist’s and attendees from today’s sessions, take a look at the links below:

https://www.nihr.ac.uk/blog/uk-standards-for-public-involvement-one-very-different-year-on/26600

https://genomed.com/

https://wecanadvocate.eu/publicationstraining/

https://wecanadvocate.eu/fmv-survey/

Please feel free to share this...