Endometriosis: Sharing Resources and Pooling Knowledge

Dysmenorrhoea, infertility, bowel problems, nausea, dyspareunia, vomiting, fatigue and chronic pelvic pain are all symptoms associated with endometriosis. They are also topics that are taboo in today’s society. These are not issues that we can discuss over Sunday lunch with our nearest and dearest, nor at a family party, and often not even with our friends. These are not issues with which any of us would necessarily wish to be associated, but an estimated 89 million women and girls need to deal with these symptoms - and so do their physicians.

Both of these groups have unmet needs. Effective treatment options is one of them; the other is information about current knowledge and resources that will enable them to put together an individualised treatment plan tailored to the personal circumstances of the woman in question: be it to tackle pain, to resolve subfertility, or both.

Competing for time and being able to provide timely information is one of the challenges of the 21st century. The Internet enables a new way of thinking and a new way of interacting with each other.

The expert patient
According to the International Alliance of Patients’ Organisations, ‘All patients, no matter their condition, background or nationality, have a fundamental and legitimate human right of access to all kinds of information about their health, medical conditions and the availability of treatments including knowledge of the best available management for their disease’[1].

The era of the educated consumer has arrived. For women, a growing desire for information parallels a wish to take more responsibility for their health and be more involved in their treatment decisions. Patients accept less and less that health care professionals should unilaterally make these decisions for them. However, whilst women may be experts at having endometriosis, they are not experts at treating the disease. They need access to information about their options and expect health care professionals to act increasingly as facilitators or partners (Table I). 

Good patients of the future will:

Bring a list of questions to the consultation and will expect answers in clear terms

Know how involved they want to be in decisions about their health care; most will choose to share decisions with their health care providers

Have free access to their health records on paper or through electronic means and use it or share it as they see fit

Request and receive a second opinion whenever they face a major diagnosis or treatment decision

Use the telephone, Internet and other forms of communication to complement personal visits from members of the health care team

Congress coverage, including PowerPoint presentations, abstracts and posters

Key opinion leader interviews and expert views

Monthly news and press coverage

Educational tools, including a tutorial, guidelines and a larger image library

Physician debating forum

Women’s chat room

The Coping Zone, including around-the-world news from national support groups and coping articles, which can be translated into local languages

Events calendar

Job listings in the field of endometriosis

MEDLINE access

Finding reliable information
Support groups, in which sufferers living in the same area and sharing a disease can be put in contact with each other, have previously met the needs of the endometriosis patient.

However, to a certain extent support groups are failing because they do not have the infrastructure to keep up with the growing demand for current and prompt delivery of information. Patients are turning to the Internet to find the answers they seek and rejecting traditional organisations.

The Internet provides today’s busy woman with information on demand 24 hours a day, 7 days a week, with the added option of remaining anonymous, which allows her to communicate with fellow sufferers and discuss a topic that is still hard to discuss openly.

Women’s determination to understand their disease and find the best solution for themselves can result in them being better informed about the treatment options than their physicians. This could create an inequity in the therapeutic area unless strong efforts are made to unite the two groups online.

The expert physician
Every field in health care is moving towards specialisation, and none more so than that of women’s health. Endometriosis is a typical example of a niche area. According to market surveys performed by OBGYN.net, 50% of Internet searches using a search engine to access their website are disease-specific. Women with endometriosis typically look for information about the disease: 68% specifically about treatments and products.

“Women’s determination to understand their disease and find the best solution for themselves can result in them being better informed about the treatment options than their physicians.”

In order to be able to respond to growing patient needs, it is imperative that the physician has access to the same information source as the patient in order to support the patient’s choice and to provide advice on ongoing treatment.

“It is imperative that the physician has access to the same information source as the patient.”

Sharing resources
An all-encompassing website on endometriosis has become the answer. Endometriosis Zone (EndoZone.org) has joined forces with leading specialists and opinion leaders in the field of endometriosis to create the largest, peer-reviewed, online resource in the world devoted entirely to the treatment of endometriosis, where the content is aimed at both patients and physicians (Table II).

Through a shared information source, both parties can prepare for a consultation, and if both parties know what the other is reading, communication is easier.

Endometriosis Zone has developed specific sections aimed at physicians or patients, to meet their individual needs, but each section is open to all users (Figure 1: Home page of the Endometriosis Zone website.).

For the general gynaecologist Endometriosis Zone provides access to those who specialise in the treatment of the disease. Most physicians attend a limited number of congresses, and endometriosis is just one of many topics covered at a general gynaecology congress, making it hard to justify attending for that one reason alone. This means that it can be difficult to keep up with key opinion leaders in this specialist field. However, Endometriosis Zone compiles abstracts, presentations, posters and interviews with endometriosis experts from several congresses, delivered to the physician’s desktop on demand at his/her convenience. In the physician’s own time s/he is able to discuss specific cases, aspects of endometriosis, compare controversial issues, and utilise online tools. Physician and patient questions are catalogued and archived on the website for future reference by others who may have similar concerns. Both physicians and patients can then tap into this wealth of information with a high degree of reassurance as to the accuracy of the advice offered - even if the experts do not always agree; the entire range of views is available within one resource. to provide support through diagnosis and treatment options and pathways.

“Good preparation can optimise the value of the physician-patient encounter.”

Experts working together
As was highlighted by Donaldson in a recent article[3], patients should be encouraged to read the medical literature and understand current trends in the management of their condition; this will help them choose the options most appropriate to them. Being familiar with the medical terms makes the physician consultation more effective.

Good preparation can optimise the value of the physician-patient encounter. Respected Internet resources cut down on time spent educating patients in the office and present the physician with an opportunity to help patients navigate the wealth of information on the World Wide Web.

Although it can prepare a patient better for a consultation, the Internet cannot replace old-fashioned one-to-one communication. But for that communication to be effective, both parties must recognise and respect the other’s area of expertise and learn from each other via a shared resource. Thus physicians and patients can pool knowledge to their mutual benefit.

References:

References
IAPO. The views of EU-based patient groups. June 2002. Available at: www.emea.eu.int/pdfs/human/patientgroup/presentation14.pdf.
Jadad AR, Rizo CA, Enkin MW. I am a good patient, believe it or not. Br Med J 2003; 326: 1293–4. Available at: www.bmj.bmjjournals.com/cgi/content/full/326/7402/1293.
Donaldson L. Patients as health care consumers. Br Med J 2003;326: 1279–80. Available at: www.bmj.bmjjournalscom/cgi/content/full/326/7402/1279.