Nigel and I attended the CML Advocates conference in May, in Warsaw. It was a very interesting few days,
The presentation slides and videos of presenters are now available on the CML Advocates site.
https://www.cmladvocates.net/cmlhorizons/cml-horizons-2018
Fire any questions about anything presented this way - both Nigel and I will have had many conversations about the content with the presenters and other attendees that is not captured in the slides and videos below.
Topics presented:
CML Introduction:
- Introduction to CML, science and data
Medical Session #1:
- CML Management in Countries with Access Challenges
- Access to treatment (Eastern Europe) (Andrija Bogdanovic)
- Access to monitoring (Africa) (Nicholas Anthony Othieno Abinya)
- TFR in low and middle-income countries (Asia) (Raymond Wong)
Advocacy Session #1:
- Improving the communication with patients
- Patient-Doctor Communications: Introduction and moderation, Why is patient-doctor communication important (Cristián Neves)
- Roleplay: Gail Sperling(doctor; Gianantonio Rosti (patient)and Erin Schwarz(wife) - Panel discussion with Q&A
- Communication with patients; Managing anxiety (Irene Caballes)
- Talking to teenage patients (Cristián Neves)
- Empowering the caregivers (Gail Sperling - LLS)
Advocacy Session #2:
- Evidence-Based Advocacy 1 - Generating the evidence
- Barking up the right tree on access, policy & research. Why evidence-based advocacy? (Jan Geissler)
- What kind of data? Some advocacy examples Doing surveys: The Leukaemia Care Patient Experience Survey (Zack Pemberton-Whiteley)
- Social Media-based data: Facebook Group example (Toni Montserrat)
- Patient-Reported Outcome Measures (Felice Bombaci)
- Doing Focus Groups: Max Foundation Focus Group on PCR (Cathy Scheepers)
Medical Session #2:
- First-line decision making
- Did the introduction of generics change clinical decisions in first-line therapy? (Gianantonio Rosti)
- Pediatrics: New labels of Nilotinib and Dasatinib (Meinolf Suttorp) Available from 1st July 2018
- Update on Treatment Guidelines (Delphine Rea)
Medical #3: Side Effect Management
- Long-term side effects of TKIs (Gianantonio Rosti)
- Collaboration of cardiologists and hematologists (Tristan Mirault + Delphine Rea)
- Side effect management: Nurse experience (Irene Caballes)
Advocacy #3:
- Stopping CML treatment - clinical data, bad practice, patient information
- Clinical update on TFR studies (Delphine Rea)
- Bad Practice examples (Jan Geissler)
- Informing patients about TFR (Giora Sharf)
Medical #4:
- New Agents / New Regimens
- ABL001/Ascitinib trials (Delphine Rea)
- Is there any evidence to use lower TKI doses? (Delphine Rea)
- How will therapeutic landscape in CML change in next 5 years in your region? Panel discussion with speakers from Asia (Raymond Wong) Africa (Nicholas Anthony Othieno Abinya) Eastern Europe (Andrija Bogdanovic), Europe (Gianantonio Rosti)
Advocacy #4:
- Evidence-based advocacy 2 - Using the evidence (Theory & Examples)
- Influencing industry: Example WECAN Legal Agreements survey (Šarūnas Narbutas)
- Influencing regulators and HTA: Example patient evidence in HTA in the UK (Zack Pemberton-Whiteley)
- Influencing scientists and clinicians: Example Surveys on adherence, TFR and generics (Jan Geissler)
