Patient Advocacy sessions were again an integral part of EHA’s annual congress program! PDFs of all three patient advocacy sessions are now available. Click on the respective presentation to download the slides.

We would like to thank CML Advocates Network for putting all together this information and circulating across all the involved groups.

Saturday, 13 June 2015, 8:00-9:30:

PATIENT ADVOCACY SESSION #1 – COLLABORATING WITH PATIENTS FOR SUCCESSFUL HEMATOLOGY RESEARCH AND FOR ASSESSMENT OF OPTIMAL BENEFITS AND RISKS
SESSION SUMMARY:

Well-informed patients and patient advocates have a key role to play in the implementation of patient-centred clinical research, access to novel treatments and treatment optimisation approaches. In an era of growing demand and emphasis on both quality and sustainability of healthcare, it is critical to involve patients in the R&D process, as it can accelerate research and make it more effective.

In many disease areas, patients are already actively engaging in the many processes involved in the development of new treatments: from contributing to protocol design, informed consent and ethical review – to the overall medicines development process, marketing authorization and healthcare policy. In addition, new technologies like mobile apps can help to collect better real-world data on side effects and patient-reported outcomes.

This session looked into innovative ways to involve patients in haematology clinical trial design (e.g. in trial design, but also with mobile apps for trial participants), how to educate patients to make them well-informed partners in trial design, and how to strike the difficult balance of benefits and risks in trials.

CHAIRS:

• Sofia Sa Cardoso, APCL (Portuguese Patient Association Against Leukemia), Portugal
• Sophie Wintrich, MDS Alliance / MDS Foundation, UK

TOPICS & SPEAKERS:

• Innovative ways to involve patients in trial design and conduct: An investigators’ perspective on SPIRIT-3 trial (by Steve O’Brian, MD, Northern Institute for Cancer Research, Newcastle University Medical School)
• Patients as partners: Empowering patients to contribute to clinical research (by Jan Geissler, European Patients’ Academy (EUPATI) / CML Advocates Network)
• Patients’ perspectives on weighing up benefits and risks – are we ready for evidence through adaptive pathways? (by Bettina Ryll, Melanoma Patients Network Europe)
• Differences in risk assessment between doctors and patients: Regulatory perspective (by Douwe Postmus, European Medicines Agency)

Saturday, 13 June 2015, 11:30-12:45:
PATIENT ADVOCACY SESSION #2 – PARTNERSHIP AND EVIDENCE: KEY ELEMENTS TO IMPROVING ACCESS TO TREATMENT
SESSION SUMMARY:

There have been significant improvements in haematological treatment in the last decade. However, there are still important differences regarding how patients benefit across regions. The development of new, more expensive drugs adds pressure to these already existing differences. These access issues are a potential source of inequity, leading suboptimal patient outcomes depending on where patients live.

Limitations to treat patients according to the best standards and treatments, lack of access to drugs and diagnostics, lack of sufficient innovative research and clinical trials and unacceptable time gaps between clinical discovery and clinical practice are some of the frustrations both patient advocates and haematologists share.

Successful advocacy for access requires a collaborative approach, besides a detailed understanding of the country–specific barriers which are preventing access to the best treatment and care. However, until now, initiatives to improve patients’ access to treatment have only had limited success. What is more, clinicians and patient advocates have often advocated in isolation of each other when they should have been working together.

This is why new approaches are so urgently needed, if we are to resolve the issues of the last decade. Not to do so would almost certainly mean patients will not benefit from future treatments, diagnostics etc. Not taking action on this is not an option for patients and hematologists.

This session explored today’s challenges, issues and the opportunities of the future, and presented the perspective of a hematologist on access, as well as two case studies from patient advocacy groups who have built new collaborative approaches between patients, clinical experts and policy makers to improving access to medicines.

CHAIRS:

• Eric Low, Myeloma Patients Europe / Myeloma UK
• Karen van Rassell, Lymphoma Coalition

TOPICS & SPEAKERS:

• Today’s challenges and opportunities in access to treatment / Case study: European Atlas of Access to Myeloma Treatment (by Ananda Plate, Myeloma Patients Europe)
• Haematologists’ perspective: collaborating to generate evidence for better access (by Prof Dr Heinz Ludwig, Wilhelminen Cancer Research Institute Vienna)
• Good practice example on evidence-based collaboration from a patients’ perspective (by George Constantinou, Thalassaemia International Federation) (no PDF available yet)

Saturday, 13 June 2015,14:30-15:30:
PATIENT ADVOCATES CAPACITY BUILDING MEETING

SESSION SUMMARY:

The EHA Patient Advocacy Capacity building meeting aims to strengthen the collaboration and work of patient advocates in the area of hematology across disease areas. This years’ capacity building session, a closed-door meeting attended just by the EHA patient advocates, aimed at guiding patient advocates and patient organisations on how to advocate for access to treatment and how to become involved in research. Discussions aimed to set up work groups and distribute the several tasks, following up on the content of the two patient advocacy sessions.

See the presentation of the capacity building meeting here.

The new workgroup “Patients involvement in research” agreed to collect available educational resources (material, training events for patient advocates) and share this with the community (see link here). This would allow patient advocates who would be willing to engage in research to better understand where and how to start. In addition, the group agreed to share best practice examples where patient advocates are already involved in hematological research. Volunteers for this group were Jan Geissler (facilitation), Felice Bombaci, Alfonso Aguaron, Bergit Kuhle, Viorica Cursaru, Davy Alan Charlottenfeld, Mira Armour, Sophie Wintrich, Karin de Boer and Marlies Oom (more contributors are always welcome!).

The new workgroup “Access to treatment” discussed how to collaborate to build a joint strategy, to develop a joint toolkit to advocate for access to treatment, and to share data between from ongoing projects e.g. in myeloma and lymphoma and other advocacy organisations. Workgroup members are Ananda Plate (lead), Guy Bouguet, Diego Villaon, Tony Gavin, Viorica Cursaru, Charlotte, Rosemarie Pfau, Charlotte Roffiaen and Derek Alston.