Kreftlex

Oncolex.no has proven to be a very successful project, but the information has been aimed at health workers. We reckognize an increasing need for information about cancer, and we believe we can also create a unique website for patients and their relatives – richly illustrated and written in a straightforward manner. Hopefully we can contribute our knowledge and experience to help patients and relatives live and cope with the cancer diagnosis.

Background

In Norway, 1 in 3 is diagnosed with cancer during their lifetime. About 25 000 persons are diagnosed with some form of cancer each year. Around 174 000 persons, and even more relatives, live with a cancer diagnose.

Evidently, cancer is a disease that in some way affects most of us. In this situation, most people react with anxiety and fear. We are uncertain and concerned about the future, and hence fear that the illness may become life-threatening. Questions about the diagnostic tests and different types of treatments one must undergo, the consequences of the treatment, the time aspect for assessment and treatment, pain, quality of life, survival, etc. often arise.

The doctor will answer many of the patient’s questions, but in conversations with the doctor it can be difficult to perceive everything that is being said. Patients and relatives are often left with many unanswered questions, and they often have a further necessity for information about the disease and treatment options.

We envision that a website about cancer will help to provide patients and their relatives with relevant and quality assured information at one place. Patients and their loved ones will now in quiet, familiar surroundings be able to learn about the many issues that arise when a cancer diagnosis is made.

Experience from Oncolex

Oncolex.no is a free online encyclopedia with background information, procedures and national registers in diagnostics, treatment and monitoring of cancer, written primarily for health professionals. The website has been created by the Institute for Medical Informatics and is funded by the Norwegian Radium Hospital and the Southern Norway Regional Health Authority.

Oncolex.no has thus far been a very successful project, which among other factors is reflected in the number of visitors. More than 6000 health workers use Oncolex each week.

Oncolex for patients and relatives

The number of visitors and the feedback we have received proves that there is a great interest in Oncolex. We see that people outside the health care system also use Oncolex, and we then assume that the majority of these are patients and their families seeking information about the cancer diagnosis and treatments. This encyclopedia is for the moment written and designed for healthcare professionals and can be difficult to understand for other groups. Oncolex will therefore, in many cases, not satisfy the information needs of patients and their relatives.

Objectives and Target Groups

The aim of this project is to create a website for patients and relatives, in which all cancer types are described in detail and illustrated. We envision a site that in a thorough and credible way provides relevant information about the particular cancer types. We desire to create a website where patients and their families can feel confident that the information they find maintains a high professional level and that the content is credible and comprehensible. The website shall also be welcoming and appealing, easy to navigate and have an intuitive structure. Words and phrases will be written so that the content is readable and clear for most people who lack knowledge witihn medical terminology.

Purpose

• The purpose of the website is to provide patients and relatives the opportunity to acquire knowledge about cancer. Knowledge gives security and confidence, which in turn forms the basis of mastery and empowerment. Experience indicates that in some cases, mastery is a prerequisite to prevent worsening the disease or the development of serious complications.
• Increased knowledge about the disease will also help make the patient capable of making his or her own decisions and be more involved in the assessment of the treatment and follow-up. As a result, this can contribute to an increased quality of life.

Increase of internet users, by age

Patient Education

The law on Specialized Health Services § 3 – 8 states that guidance of patients and their families is one of the hospital’s four major theses. This section is defined as follows: “Hospitals shall especially fulfill the following tasks: patient care, education of health personnel, research and education of patients and their families.”

This means that the education of patients and their families and patient care are equally significant. Educating and enlightening patients with prolonged illness is especially important, and is often essential for them to further master their own lives.

Cancer is a disease that causes severe challenges for patients and their families, and often requires special educational needs. A website about cancer, written specifically for patients and their families, could be an important supplement and an appropriate, helpful tool in addition to other patient education as provided by health professionals.

Opportunities

The website will initially be designed for the user to actively search information on a general basis, but we see the possibility to develop a more dynamic and interactive website where patients and health professionals meet. We also envision a solution where the patient can use the website as a diary or journal to log information about his or her health situation, and where the patient’s progress can be planned. Other opportunities are to create a separate page specifically for children, and forums where patients can meet and exchange experiences, useful tips on nutrition, exercise, etc.

Why This Website?

We believe that we can create a unique site about cancer.

• Our hospital has long experience in cancer treatment and hold extensive expertise in the field.
• The hospital is a leader in cancer treatment in Norway, and the information published will therefore be trustworthy and credible.
• The fact that the website will be non-commercial will help to ensure that the information is perceived as reliable.
• Adding additional functions for patients to enter information about themselves and their health status will contribute to a unique solution.
• All relevant information will be gathered in one place.
• We place great emphasis on good design and usability to attract attention and stand out from other sites within the same niche.

CONCEPT

Design and Layout

It is crucial to build trust within the users. All website will therefore be high-quality, both in terms of text, images, animations and graphic design. The content will be perceived as professional and credible.
We want to develop intuitive and user friendly website where the browsing and navigation is easy, comfortable and effective.

Technical Architecture

The publishing tool utilized in Oncolex today is developed in Sitecore. The system is based on Microsoft.NET – technology, and is a modern, well-recognized and convenient tool that is well suited for this purpose. Sitecore is considered a natural choice because of the experience and competence we already have gained using this content management system in Oncolex.

The encyclopedia will be located on a separate domain with its own IP address. The name should reflect that the website has cancer patients as its target group and is a relevant source for information about cancer where all necessary information is assembled in one place.

Why We Need This Information on the Web

According to a report on public information resources within health on the web, prepared by the Norwegian Knowledge Centre for the Health Services in 2004, the following points were mentioned as important in the context of electronic collaboration in health care:

Patients want information they can use to discuss with their doctor

Many patients request information they can use to talk to their doctor more effectively about their illness. According to a study conducted by Eysenback (2003), 50 % of all cancer patients were dissatisfied with the information they had received from their doctor.

Users seek answers to unanswered questions

The majority of people using the Internet for health information are satisfied with the information they receive. The users seek websites with credible and updated information from professional sources, clear and comprehensible content, references to clinical studies and low focus on advertising.

Users want themselves to be updated even after the diagnosis has been made

• People with diseases that are difficult to diagnose or have few treatment options are more likely to seek information on the web. Online information services continue to be important even after the patient has been diagnosed.
• Web-based information services will help ensure the patient’s right to involvement by providing relevant, reliable and accessible information.

Interested Parties

Patients and their families will primarily benefit from the website. Health organizations and advocacy groups will find the website useful as well.
Oslo University Hospital will also profit from using the website as supplement to the training that would otherwise be given to parents and their families.

Other Interested Groups Include:

• The Norwegian Cancer Society
• The Regional health authorities
• The Norwegian Directorate for Health and Social Affairs
• The Royal Norwegian Ministry of Health and Care Services
• Hospitals and institutions with emphasis on cancer
• Primary health care
• Domiciliary care
• Other Health authorities

CONTENT PRODUCTION

The website will in a straightforward manner describe the different cancer types. Each cancer type will contain information about the anatomy, function and location of the organs the cancer has occurred in. We will also provide information about the spread patterns and stages of the different cancer types. In addition, various methods of medical examination and treatment related to the specific cancer stages will be elaborated. The content will further be illustrated with photos, videos and 3D animations to enrich the website and make it more reader-friendly.

Unlike Oncolex, this website will mainly focus on the issues and challenges that patients and their relatives are concerned with. To achieve this goal, the website will therefore describe the different stages in each cancer type and the many decisions and challenges the patient will face during the treatment.

Below is a brief description of elements that appear natural to include on the website:

Anatomy, Function and Location

We will describe the anatomy, location and function of the particular organ clearly, and include animations and 3D images to provide a broader insight and understanding of these topics.

Factual Information about the Cancer Type

We will describe the particular cancer type with simple and thorough explanations of its causes, stages, dispersal patterns, symptoms, etc. Photos, animations, charts and graphs will contribute to a more detailed explanation.

Diagnostic Tests

There will be given a thorough description of the diagnostic tests taken in conjunction with the particular cancer type. Here it will be relevant to describe the medical examinations and tests to be taken, and explain the procedures for these tests. For instance, an explanation of the procedures in an MRI-test can be provided, the preparations that must be taken before it, and different results that can be expected. Another good example is an explanation of the purpose of inserting a central venous catheter and how it is used, and guidelines for the patient using this catheter.

Potential Side Effects and Follow-up

The patient will probably find it relevant to know more about the side effects that may occur after or during the treatment, and about the follow-up that can be expected after the treatment has been completed.

Treatment

Patients and relatives will be informed about the different methods of treatment most common for the particular cancer type, and they will be given a description of what determines the choice of treatment method.

Treatment Timeline

In this section we will illustrate the normal treatment timeline for the individual cancer types depending on the stage, size, location and metastasis to other organs. We envision a dynamic solution where patients choose the characteristics that best fit their diagnose in order to receive the most relevant information about their disease.

The Patient Journal

With today’s internet technology it is possible for the patient to safely register information about himself and his illness in an online journal. In this journal, the patient can compare his own results from for instance blood tests, information about general health, dietary intake and weight or compare his results with general values, etc. This information can then be included in the patient journal if desired. The patient journal will contribute to a better dialogue between the patient and the treating institution and consequently give a more realistic picture of the patient’s life. As a result, this can bring forth efficiency and improvement in the treatment program. In addition, patients will be increasingly involved in the treatment.

The Project Phases

Initially, we have defined objectives and framework for the project, and applied for funding. The Norwegian Radium Hospital Foundation has made financial contributions for the project to continue. A prototype of the website is currently being developed.

The project is scheduled to last for two years, and will be organized by forming a steering committee and a project group. The steering committee will have the superior responsibility of the professional development and management of the project. They will also thoroughly review deliveries, so that the decisions made in this project are aligned with the purpose of the project, and will aim on a significant increase in quality and efficiency of the organization.

The project group will serve as an editorial board, obtaining information from organizations targeting patients and the public, such as health-related user groups.

The project group will be composed of:

• Project Manager
• Multimedia Persons for illustrations, animations and design
• Photographer for images and videos
• Web Developer
• Editorial

Patient- and user organizations will be important partners in the project. They know the target audience well, and the types of challenges that are specific to the particular cancer types.

The encyclopedia will be a non-commercial product.

The name of the site should be unique and reflect that this is a website about cancer. We have therefore decided to reserve the domain name “kreftsykdommer.no” which in english translates in to “cancertypes.no”.
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The Institute for Medical Informatics (IMI) is a research and development department at the Norwegian Radium Hospital, Oslo University Hospital HF. The institute has its main focus on projects in the fields of medical informatics and cancer research. In the field of software development, we have our strengths in image processing and analysis, clinical information systems and internet technology.

IMI’s experience working with the Oncolex-project will be very useful in conjunction with the launch of a new website about cancer for patients and their relatives. The institute is highly competitive in the use of advanced technology, contemporary design in 3D and Flash, animation and photo/video. In addition, the institute has an experienced editorial staff consisting of qualified nurses and doctors with extensive expertise in cancer treatment and editorial work.