PMF Patient Week 2021

Report for our Patient Week Event

Did you miss any of our patient week sessions? Take a look at this report for a breakdown of what happened during our inaugural Patient Week

March 8

During our session on March 8 at 2pm, our speakers came forward to discuss  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
  • 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:

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.

Steve Coldicott, Director of Precision Medicine Forum, asked, “How do you think we can ensure greater developments in drug development with patients involved?”

Ella Balasa responded, “I really think patient education and training is really vital. I think currently there is little of this happening in industry and organisation’s as well.

“I think industry also hasn’t been trained to need, or realised the need for the patient voice. This is shifting as they realise that recruitment is going to falter when they develop a product that isn’t user friendly or relevant to their target population.”

If you’ve missed any of the sessions, you can watch them on demand by registering here. You can also watch shorter clips from the event by visiting our vimeo page 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 these sessions 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/

March 9

Our second day of sessions began with our panelist’s diving into the topic Patient Centric Data Collection and Sharing.

It highlighted the benefits and downfalls of data collection and sharing in the digital age. This is an issue that has been raised during several of our virtual panel series sessions so we understood the importance of letting patient’s ask the all-important questions surrounding data.

The speakers that joined us for this session were:

  • Natalie Banner, Lead – Understanding Patient Data (UPD), A Wellcome initiative
  • Sandra Liede, Lawyer, Regulatory Affairs, Healthtech Finland
  • Nick Schneider, Lead, Division on New Technologies and Data Use, German Federal Ministry of Health

An audience member asked the question, “Would data credit cards be a good idea?” to which the panelists were firmly against the idea as there were ethical and safety concerns about how the data could then be used.

Speaker Natalie Banner, of Understanding Patient Data, responded: “If you think about the idea of ownership for a start, you can’t own your data by law the same way you own a house or a car.

“I know the idea of ownership sounds attractive, but actually I think in practice, it may not enable you to get the empowerment that I think people want to see about when they’re talking about their choices about how their data is used.”

Once this fantastic session concluded, we moved onto our next one, “Public and Patient Involvement (PPI) and Engagement (PPE) in Research”.

This session focused on how we can get patient’s into early stages of research and clinical trials, as well as how to get the right participants for research.

Our panellist’s for this session were:

  • (Moderator) Sara Badreh, Senior Health and Research Projects Manager, European Cancer Patient Coalition
  • Jillian Hastings Ward, Chair of the Participant Panel, Genomics England, Board Member, CureGRIN
  • Dave Bjork, Patient Advocate and Research Evangelist
  • Larry Mróz PhD, Research Services Lead, BC SUPPORT (SUpport for People and Patient-Oriented Research and Trials), British Columbia

We also had Sharon F. Terry, President and CEO of Genetic Alliance, who was going to join us but due to technical difficulties was unable to.

The conversation opened up with Sara Badreh outlining the necessity for patients to be involved in research and clinical trials and the difficulties of making that happen.

Then it continued onto the general discussion between panellists, during which Sara asked,  “Why do we have this persistent problem with communication?”

Dave Bjork responded, “I feel like there’s been so much important progress within companies with them having patient panels and patient advisory boards, but I think it’s like turning around a big, huge ship – it’s hard.”

He then went onto expand into discussing the regulatory, ethical and legal concerns that may be holding back the engagement between patients and researchers.

The overall takeaway from this discussion is that everyone is aware of the issues surrounding getting patients involved in research and clinical trials, but no one has quite worked out the best way to do it yet. Effective communication is key to any successful outcome between patients and researchers.

March 10

Our discussions on March 10, started with our panel discussing, “The Pivotal Role of Real-World Data and Real-World Evidence in Healthcare Decision Making.”

Joining us for this panel discussion were:

  • (Chair) Gilliosa Spurrier-Bernard, Vice-President of Melanoma Patients Network Europe, Chair WECAN, President of Melanome France
  • Miriam Döbeli, Co-Founder and President, Colorectum
  • Tjebbe Tauber, Patient Advocate, Inspire2Live
  • Chris Carrigan, Expert Data Adviser, use MY data

The fascinating talk began with our panellists introducing themselves, during which time Miriam Döbeli shared with the audience her husband, Conradin’s, spreadsheet that he produced when he was diagnosed with colorectal cancer.

Miriam stood by him throughout his cancer journey and came to understand the depths of cancer diagnosis, treatment, and data collection. It gave a fascinating insight into how he, as an ‘expert patient’, was able to track the treatments that were working or not, his bio-marker counts, and so much more. 

Before our patient week event, we did a short interview with Miriam about this which you can watch here.

This led our panellists to talk about the storage and access of real-world data. They were asked the question, “How do we open up this ‘my precious’ mentality where everything is stored and we’ve got hundreds of datasets, what do we do?”

Chris Carrigan, said, “The law here is not the preventing factor. The law, GDPR, is fine. What is wrong is the policy, or the politicians, which control the data is very risk averse, they are very frightened of doing the wrong thing.

“What we need is much more of a focus on the benefit of using data. We’ll have seen the data saves lives hashtag being used across Europe. Data saves lives I think is true. Surely, if we’re not using data then we’re losing lives.”

This fantastic panel discussion really honed in on how important it is for data to be accessible and usable in order for progress to be made with diagnosis and treatments for various diseases.

#DataSavesLives

Don’t forget to watch all the clips from the event here.

The second panel discussion on the 10th looked at patient education and communication. Our panellist’s had an in-depth discussion about the need for education to start earlier in life, how best to educate patients, and the best methods for communicating with patients in and outside of a clinical setting.

For this panel, these wonderful speakers joined us:

  • (Chair) Gilliosa Spurrier-Bernard, Vice-President of Melanoma Patients Network Europe, Chair WECAN, President of Melanome France
  • Dany Bell, Strategic Advisor Treatment, Medicines, Genomics, Macmillan Cancer Support
  • Tamara Hussong Milagre, founder and president, EVITA
  • Piarella Peralta, Patient Advocate, Inspire2Live

There was talk about education of patients starting much earlier in life as most often know very little about different diseases until they become a patient themselves. The accessibility of educational information is brilliant with the use of the internet, but it’s important to disseminate fact from fiction where medical literature is concerned.

The panellist’s were asked, “how patients learn and who decides what patients should know? Are there any rules in patient education?”

Piarella Peralta, said, “Well, it’s coming back to two things, timing is a very powerful thing we cannot underestimate. Tamara going back to your point we need to go to schools and we need to start keeping up with the developments of managements of care to children.

“What I see as a patient advocate is a lot of family and friends who are confronted with disease who [ask the questions] straight away, then there’s those on the other side of the table who are struggling to deal with their diagnosis.

“I would advocate that we take what the patient needs at the point of the departure and build from there.”

The panellist’s were in agreement that more must be done earlier in life to educate everyone about diseases. There was a consensus that waiting until you’re a patient is too long to wait to have a firm understanding of how the medical world works.

It was highlighted that the needs of the patient are of the utmost importance when deciding what they should know about their disease, treatments, and care as no one patient is the same.

March 11

Our final day of discussions began with the topic, Putting Our Faith in Technology. With the rise of telemedicine and wearables, it is critical to open up discussion about the safety and efficacy of such technology.

Joining us for this panel discussion, we had these fantastic experts:

  • Ilkka Räsänen, Senior Lead, IHAN®- Human-driven data economy, Sitra
  • Richard Ballerand
  • Kevin Chaney, Senior Program Manager, Scientific Advancement Branch within the Office of the National Coordinator for Health IT (ONC)

There has been much controversy surrounding the introduction of new AI technologies into healthcare with some even believing it could replace actual doctors in clinical settings. The panellist’s were keen to dispel this myth as technology and clinicians must work together in order to have a successful outcome for the patient.

Furthermore, the digital divide experienced by some patients has been highlighted as a big issue when it comes to ensuring all patients get the same level of care when technology is involved.

Audience member, Piarella, asked, “How do the panellists see technology contributing to access for all? In particular making sure innovation is for all patients, and not continuing to just serve certain populations.”

Kevin Chaney, responded, “Look at the digital divide. At least from my experience, in the US, a lot of these technologies become more affordable. But there are still issues such as broadband internet service, access to the internet is the lifeline in which data flows, comes and goes.

“So the fabric here is in what ways are we working with our communities, the leaders of communities, different organisations and others to create partnerships and networks to hopefully minimise the digital divide that we have out there, and provide opportunities for individuals to have both access to technologies and that the technologies are useful and useable.

This fruitful session concluded our panel-led discussions for the week and we moved onto our final hour of the event, Where To Next?

For this session, we wanted to invite the audience members to ‘join the stage’ and ask any questions they may have or make any statements relating to the topics discussed throughout the week.

We were thrilled that Matt Eagles, long-term Parkinson’s Disease patient and advocate, joined the stage to share his story with everyone. Not only is it inspiring, but it is absolutely fascinating and we highly recommend you watch this video of Matt speaking during the session:

https://vimeo.com/522890187

Thank you to everyone who joined us for the week. It was an educational and interesting experience and we hope you will join us again in September (27 – 30) for our next Patient Week event.

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