Myelom-Gruppe Rhein-Main

Last modified: 12 January 2013

Providing Information and Educational Resources

Patient & Family Myeloma Infoday Guidelines

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Patient information checklist

When producing patient information and educational resources, the following checklist is a useful tool to ensure it is relevant, accurate, appropriate and reviewed on a regular basis.

Download Checklist:

Introduction

Information and education services, such as patient brochures and leaflets, seminars and workshops have become an integral part of hospital based treatment and care and are what many patient support groups offer to their target groups.

Principles of cancer information

  • a patient should be able to access any information that meets their personal needs.
  • the available information should cover emotional support, practical advice, experiential information and medical information.
  • the information should be clear, straightforward, accessible, accurate, reliable, honest and respectful.

The role of cancer information

There is a considerable body of evidence to demonstrate that people with cancer want information about:

  • the illness itself.
  • the treatments available and their likely side effects.
  • the things they can do for themselves to help cope with the situation.

The function of information for patients has been described as:

  • to gain control.
  • to reduce anxiety.
  • to create realistic expectations.
  • to promote self-care and participation.
  • to generate feelings of safety and security.

The impact of receiving too little information may be increased uncertainty and anxiety and dissatisfaction with the care provided.

Although there may be reasons why patients do not wish to receive information, several large studies have indicated that people with cancer generally want detailed information about their cancer, regardless of whether the news is good or bad, including the likelihood of a cure. Very few patients do not wish to know whether they have cancer.

Since the information given to patients can play a significant role in their decision making it is essential that any information they receive that they use to support their decisions is of the highest possible standard.

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Tips for producing good information

  • Information and education should always be provided by adequately trained and qualified professionals.
  • Sources (e.g., the authors and reviewers of brochures or the trainers and facilitators of seminars) should always be clearly referenced on all related materials.
  • A telephone number and/or e-mail address should be given for feedback and comments of service users.
  • The funding sources of all information and education services should be clearly stated on related materials.
  • The information provided should be continuously kept up-to-date, always indicating when it was last updated.
  • Outdated or no longer valid information should not be distributed.
  • Information based on scientific research should be as precise, clear and complete as possible, interpreted into language that is easily understood.
  • Information should be tailored to the needs of target audiences and easily understandable. Medical jargon should be kept to a minimum and explained appropriately, for example, through providing a glossary of terms.
  • Information should not disclose confidential, privileged or sensitive information relating to individuals unless those individuals have given their written consent.
  • Any personal information that is shared in educational training sessions has to be kept strictly confidential by all parties involved.
  • All users of information and education services should be treated with respect, not discriminated against or patronised.
  • Information and education services should be unbiased, truthful and honest and should follow the principle of informed choice i.e. never seek to promote certain (treatment) decisions, but assist target audiences in making informed decisions of their own.
  • It should be stated that information and education services provided are not intended to replace the advice or treatment from health care professionals.
  • Reference should be made as to where people seeking additional information or education services should turn to for help.
  • Access to information and education services should be easy to access and where possible and appropriate, services should also be made available outside of normal office hours, i.e. telephone helplines, Internet services, email etc
  • Available information and education services should be adequately promoted through internal and external communication channels so that target audiences get to know about their existence.
  • The users of information and education services should be encouraged to pass relevant information on to other interested parties.
  • An appropriate record-keeping system should be established for reference purposes.
  • All information and education services should be continuously monitored, evaluated and improved. This can be done through internal and external advisory or review committees, regular supervision, analysis of feedback, user statistics, surveys, etc.
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Patient information checklist

When producing patient information and educational resources, the following checklist is a useful tool to ensure it is relevant, accurate, appropriate and reviewed on a regular basis.

Download Checklist:



 
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