All.Can Roundup # 4
A regular roundup of cancer policy, research and opinion from around the world #AllCanRoundup
Policy and initiatives roundup
Youth Cancer Europe meeting
This blog post gives a comprehensive summary of the annual meeting of Youth Cancer Europe and its goals. The network of young cancer survivors shared their experience with cancer care across Europe, and the different issues they were facing, in powerful narratives. The organisation aims to magnify the voice of young cancer survivors and advocate for more age-appropriate and equal access to high-quality cancer care.
To work towards these goals, the organisation will run capacity-building sessions for patient advocates along with policy events in the European Parliament in 2018.
Read the full article: Nick Smallwood: Young cancer patients advocate for improved care
Defining outcome measures for advanced care planning
This study aims to bring clarity to best practice in advanced care planning (ACP). It gathered input from 52 multidisciplinary, international experts to form a consensus around a framework of ACP outcomes which may help to evaluate the success of ACP initiatives. The top five outcomes defined by the panel (ranked by importance) were:
- Care consistent with goals
- Surrogate designation
- Surrogate documentation
- Discussions with surrogates
- Documents and recorded wishes accessible when needed
While defining ‘care consistent with goals’ as the most important outcome, experts were wary of the challenge of measuring this outcome. The authors conclude that measures to assess these outcomes need to be established.
Ensuring regulatory framework is ready for the advancements in personalised medicine
The advance of personalised medicine represents a paradigm shift in cancer care, and its promises create high expectations among patients. The authors of this article argue that an appropriate and rigorous regulatory framework is necessary to bring biomarker assays into clinical practice.
This position paper is a result of discussions of the practical requirements and challenges of developing such new precision medicine strategies. The discussions took place at the Innovation and Biomarkers in Cancer Drug Development meeting, held on 8–9 September 2016 in Brussels. Some of the nine emerging recommendations include:
- Assays and technologies need rigorous testing before they enter clinical practice (at present they sometimes enter prematurely).
- There should be a global standardised protocol for the collection of tissues and clinical data and investment in the infrastructure for collection and sharing of information.
- Equal access should be pursued so that personalised medicine also benefits low-income individuals in both resource-rich and -poor countries.
Read the article: Societal challenges of precision medicine: Bringing order to chaos
Ensuring quality of specialist cancer nursing
In his article, Peter Naredi, president of the European CanCer Organisation (ECCO) Board of Directors, demands EU-wide standards for training and certification of cancer specialist nurses (CNS).
Unlike most medical professions, CNSs do not share a common framework for specialisation and regulations, and approaches vary from country to country. In the light of EU institutions promoting a professional deregulation agenda, Naredi stresses the importance of the Recognising European Cancer Nursing (RECaN) project to foster the recognition of the CNS as a backlash to this development.
Read the article: Why is specialist cancer nursing important? Because quality matters