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New York Statement: 
Using information and communication technologies (ICT) and the Internet to optimize cancer control

Using the internet to optimize cancer control. Ein Projekt der ESO (European School of Oncology)
Co-Editor W. Audretsch

 

Participants at the International Conference on Cancer on the Internet are committed to promoting and developing the potential of the Internet in support of cancer efforts worldwide, from the global to the individual level. This statement was drafted at the first international conference in June 2003, revised at the second conference in September 2004, and at the third conference in July 2006 in Washington DC. It represents the views of the undersigned. The New York Statement identifies key areas for action, advocacy and collaboration in realizing the potential of information and communication technologies (ICT) and the Internet for cancer control (actions are outlined in annex 1).

Conference participants believe that cancer control can be improved, in all countries and for all people, through the efficient and effective use of the Internet. This applies to the whole cancer continuum from prevention through diagnosis, treatment, survivorship and palliative care. ICT have helped cancer control in many different ways and the benefits are being rapidly extended as the Internet grows. Internet applications and content resources for all cancer communities are an essential part of improving cancer control.

This statement recognizes the significant potential benefits of ICT and the Internet for the many stakeholders involved in cancer control efforts: patients and their loved ones, citizens, health professionals, researchers, policy makers, educators and organizations.

e-Cancer Patients

The Internet is the cornerstone of the ICT?s techno-cultural revolution that is starting to transform the nature of cancer control.  Patients have been at the forefront of this revolution and many are now regularly using the Internet to obtain information about their disease and its treatment, seek support from on-line patient communities and support groups, share knowledge and experiences with other patients and to communicate with their professional carers and loved ones.

There is a great deal of confusion and many concerns as to the quality in terms of accuracy, currency and appropriateness of online patient resources; however, it is impossible to police the Internet. Moreover, there is little or no protection for e-consumers of health sites particularly in terms of privacy, security and confidentiality. It is essential that users develop skills to evaluate ICT and the information obtained through them.

e-Cancer Care

ICT provide an important tool to facilitate clinical practice and cancer research. Professional, patient and caregiver access to and use of content and Internet/intranet applications are an essential part of providing optimal cancer care. However, this access and use have lagged for reasons of cost, effort, policy and other barriers.

Promoting Digital Inclusion

ICT access is becoming a reality in many countries worldwide as basic infrastructure and services continue to improve, but there are major obstacles in ensuring access is available and affordable so that all can benefit. These obstacles include cultural and economic factors, infrastructure, literacy, and language. An affordable, reliable, durable and high-speed infrastructure is required and relevant content will motivate ICT use. Moreover, skills to use and manage connectivity and content are essential. It is highly desirable to extend the benefits of ICT to all people: global, national, and local efforts and collaboration for e-inclusion are an important means, and measurable benchmarks to have an evaluation of progress are needed.

Fostering Global Collaboration

Many organizations have as their mandate global cancer control and international activities. The impact of their efforts can be amplified through collaboration in developing and disseminating standards and research, sharing experience and best practice, and facilitating technology development, testing and deployment. It is imperative to drive national and international co-ordination and knowledge transfer to optimize the use of resources.

Annex 1: Suggested Actions

e-Cancer Patients

  • Facilitate widespread dissemination of evaluation guidelines via established networks.
  • Encourage transparency amongst cancer e-resource developers.
  • Promote research into tools that can help consumers find quality health information.
  • Promote the use of available resources that can help patients hone their critical evaluation skills.
  • Encourage sharing of best practice on running effective on-line patient support communities (both peer- and facilitator-led).
  • Foster discussion amongst all stakeholder groups on ways the healthcare sector can become more responsive to the needs of e-Cancer patients.


e-Cancer Care

  • Raise awareness of ways in which the Internet can impact on diverse cancer outcomes and stimulate large-scale research in this area.
  • Promote the potential of knowledge and ICT to reduce workload and costs and improve communication and continuity of care.
  • Identify workable solutions to the technological, legal and attitudinal barriers to communications via ICT.
  • Point to the usefulness of the Internet as a means of providing continuing professional education and facilitating mentorship initiatives. Encourage education providers to use Web-based education approaches more widely.
  • Call on the relevant authorities to include courses on the relevance and application of ICT in healthcare and promote coverage of this topic as fundamental component of interdisciplinary continuous education [CE] activities and their evaluation.
  • Support efforts to establish registries of research and implementation projects that are freely accessible to the public, accurate, inclusive and electronically searchable.


Promoting Digital Inclusion

  • Work beyond the cancer sector to encourage electricity and phone providers as well as government departments to improve affordable connectivity, even in the remotest settings.
  • Advocate for adoption of best practice and local and community driven solutions for ICT access.
  • Find solutions for developing relevant and culturally appropriate content, including the promotion and use of Open Access initiatives.
  • Encourage the application of the principles of good health communication by those developing content for the Internet and raise awareness of the necessity to tailor on-line information to help people with special needs in health literacy or communication.
  • Intensive training efforts are required to equip underserved members of the cancer community with the skills they need to use the Internet in an optimal manner.


Fostering Global Collaboration

  • Develop the eUICC as a global resource for collaboration.
  • Identify other innovative ways to promote collaboration amongst International, regional and national cancer organizations in efforts to harness the power of the ICT in the fight against cancer.
  • Mapping ICT-based cancer-related resources should be a priority.
  • Share knowledge and mobilize resources in creative ways to build capacity, worldwide!
  • Think globally; act locally; deliver quickly ? identify and support champions to ensure the sustainability of initiatives and optimize involvement, especially around prevention and health promotion activities.
  • Explore the feasibility of establishing an all-encompassing international organization for people interested in collaborating on initiatives relating to cancer on the Internet.
  • Develop a workable mechanism to facilitate the sharing of best practice amongst people active in the cancer-related ICT arena.