ALLG Summit: Research and Clinical Care Priorities

Posted 27/03/2017

On the 16 November 2016 the ALLG participated in a summit with 14 fellow blood cancer research and not for profit organisations to explore areas of potential future collaboration.

The meeting was facilitated by Professor Andrew Roberts, Head of Clinical Translation, Walter and Eliza Hall Institute. Three emerging priority areas identified through discussion:

Improving care for regional, rural and remote communities
Access to new drugs
Support for research

ALLG is a For Purpose organisation; to deliver clinical trials to improve the outcomes of patients with blood cancer; to develop clinical trials that benefit the members and their research priorities; to partner with others that share our vision. In essence, we are a professional clinician-based organisation that seeks to improve care for patients with blood cancers through clinical trials.

The ALLG seeks to address the 3 common priority areas through achieving specific outcomes aligned to our strategic plan.

IMPROVING CARE FOR REGIONAL, RURAL AND REMOTE COMMUNITIES

Current Plans	Planned Actions/Approaches to Achieve Outcome	Seeking Partners Y/N
Increase and improve engagement with ALLG Members	Assist regional practitioners with the necessary training and resources to participate in clinical trials at local facilities to improve access to new therapy.	Yes to promote clinical trials through ALLG in regional Australia. Yes to help haematologists continue care locally where possible as part of clinical trials (funding, resources, training)
Encourage availability of ALLG trials to regional areas	Promote the clinical trial benefits. Enable more regional and rural members to attend ALLG meetings. Staff resource for site engagement and clinical trial training etc.	Yes with activities to understand any barriers, and progress opportunities that overcome those barriers.
Open the National Blood Cancer Registry (NBCR) at 80% treating hospitals across ANZ	Profile the community benefit and research benefit. Enable more patients to participate. Enable sites with resources to collect data and samples from regional communities.	Yes to promote significance to general community, particularly value of harmonised data across ANZ.

ACCESS TO NEW TREATMENT/NEW DRUGS

Current Plans	Planned Actions/Approaches to Achieve Outcome	Seeking Partners Y/N
Promote outcomes of clinical trial research to key stakeholders	Develop materials for dissemination, participate in consultations, and other activities with stakeholders.	Yes for mutual support, letters, lobbying etc.
Build relationships with industry to provide new agents for use in investigator trials	Establish face to face meetings with industry representatives to achieve stronger research alignment and mutually beneficial outcomes. Continue to have highly engaged industry support.	Yes for letters of support for access to best treatments.
Target 3-4 new trials per year	Adopt in-house roles to support the highly regulated clinical trial development and conduct space. Enable members to meet more frequently through disease areas of interest to generate new ideas.	Yes for in house services to speed up the process. To get behind new treatment promotion and support for hospitals.
Connect with international groups to participate in clinical trials	Enable staff and members to interact with international peers and co-operative groups for open discussions about upcoming trials. Facilitate as early as possible the international engagement steps. Confirm industry support for Australia's inclusion as early as possible.	Yes for support for international collaboration on clinical trial conduct.

RESEARCH CAPABILITY AND CO-FUNDING

Current Plans	Planned Actions/Approaches to Achieve Outcome	Seeking Partners Y/N
Address barriers to clinical trial research	Frequent and active engagement with industry to access new drugs earlier in the pipeline. Set and meet ambitious time-line targets for trial activation.	Yes for resources to achieve outcomes, and partnerships for research funding.
Fund hospitals to enable increased and opportunities for clinical trial participation	Aim to increase funding to hospitals to make trials more viable for hospital sites to participate.	Yes for research funding and participation support.
Aim for all trials to include high impact laboratory research (eg molecular capabilities and health economic endpoints)	Seek alternate funding opportunities for these high value areas of research that are often omitted due to funding restrictions.	Yes for letter of support and/or direct funding.
Optimise wealth of data and samples	Promote the availability of data and research samples. Provide support to researchers to enable access of data and samples.	Yes for research funding support for contribution to data and sample biobank. To help researchers optimise NBCR data and samples for research.

HELPING THE ALLG:

Helping the ALLG is helping doctors and researchers to provide better treatments for patients, creating better lives.

Driven by this purpose, we are committed to providing our members with:

Blood cancer specialists need...		ALLG is committed to providing...
Access...	to current research, trials, medicines and tissue samples.	Haematology community membership; Biobank and National Blood Cancer Registry; Accredited hospital networks.
Information...	so their patients are fully informed of the availability and benefits of carefully monitored clinical trials.	Ethically approved research; Research reports; Marketing and communication.
Support...	efficient trial design and management that optimises both trial research and patient care.	Protocol writing; Statistical and professional services; Electronic data capture.
Connections...	to Government bodies, hospitals, the research and pharmaceutical sectors and each other.	Scientific meetings; Pharmaceutical partnerships; Relationships with like foundations.
A Voice...	so their ideas are heard, their efforts are supported and their discoveries are celebrated.	Collaboration opportunities; Public relations; Government advocacy.