International e-Patients

The internet breaks completely all geographical barriers. This is particularly important for those suffering from a rare condition and who do not have direct access to the few major cancer centers with in-house specialists for that condition.

We have a developing story on one of the ACOR lists where a patient living in an Arab country was first diagnosed there with a rare cancer. The patient then went to Israel and got a second opinion, resulting in a different diagnosis for a different rare cancer.

Understandably the e-patient came to our list and asked for advice, immediately assuming that the collective intelligence of the group, with a membership of about 700, would help her/him make sense of the 2 different diagnosis.

In less than a day the e-patient has received all the necessary information to contact directly 3 specialists for that rare disease: the best specialist in Jordan, the best specialist in Israel and the best specialist in the US. While that part of the Middle East is once again witnessing untold horrors and large scale human killings, an entity based exclusively in the worldwide network has freely and naturally helped a patient by instantly removing borders. I hope we will see many more of these stories in the future.


Posted in: patient networks




6 Responses to “International e-Patients”

  1. Kurt says:

    Words of wisdom – thanks for the post. A wise woman once told me: don’t be afraid of foreigners – all of us become foreigners as soon as we leave our home country. We all can benefit from the democratic nature of the internet, especially when it comes to universal health care information.


  2. Judith Feder says:

    Gilles, I think this is a wonderful point. I’m in daily contact with women from all over the United States, and all over the world. So many people – even in our “advanced” country, have so much trouble getting to a major cancer center, or finding out what the state of the art is. The counsel we share online can be invaluable — for example, I attended Andrew Seidman’s update on metastatic BC in Manhattan two nights ago, and posted my notes online. Many of us are on or soon to be on weekly taxane treatment. There is a clear benefit, not only to the weekly regimen, but a particular dose on that regimen. I would never have known that without hearing Dr. Seidman, and I daresay most of the women on my lists would not have known, either. For those of us living with cancer, the kind of generic, relatively dated information one finds on “mass audience” Web sites just doesn’t cut it. The wisdom of the community is much richer, real time and useful.

  3. Susannah Fox says:

    I’ve contacted a Jordanian PhD student to get her insights on this story. I met her at the HINTS conference (see: Health Data Geeks Convention post on 5/22) where she was presenting her paper, “Factors Influencing Health Information-Seeking Behavior of Jordanian Patients with Cancer.” Hopefully she’ll be able to stop by in the next day or so!

  4. Laila M. Akhu-Zaheya says:

    Dear Gilles,
    I am the PhD student Susannah Fox mentioned. Thanks Susannah for involving me. I appreciate all the efforts by the e-patients members pointing to the international patients’ participation and including them, which is really they are in needs for and willing to participate with. However, many of them they don’t know how they can reach such groups and cross the boarders. I will be happy to share this with all patients I met /or will meet /and gave me their emails to contact them with any information regarding patients on the Internet.
    As Fox said my area of interest is health information seeking-behavior of Jordanian patients with cancer. I started my work with a pilot study to assess the Internet use among Jordanian patients and caregivers, since in recent years; Jordan has experienced widespread use of technology, including the Internet. Many consumers are able to access the Internet, which can be attributed to the widespread growth of Internet cafés. However, little or nothing is known about whether Jordanian patients and caregivers are using or not using the Internet for seeking health information, or their purpose for using the Internet.
    The results of the pilot study showed that few numbers of patients were using the internet; however, they were looking to contact other patients and looking for any contact to help them getting the information they needs. The results encouraged me to conduct the major study which is “Factors Influencing Health Information-Seeking Behavior of Jordanian Patients with Cancer.”
    In this study there were many patients with cancer who used the internet to get a second opinion, look for a support group, information about alternative treatment, coping and management. Interestingly, the patients were willing to participate through the Internet with other support group, saying they are the best because they have the same complains. They were striving to look for any information related to their disease. Some patients achieved their inquiry by contacting others from different country and share their experience with them. Moreover, many of them asked for a support group site or to develop a support group site where they can share their experience, knowing that they don’t know how to get access to these groups, or which site they can go.
    I would appreciate and will be happy in the future to participate and post my comments and to let the patients know (if there is no mind) about the e-patients group. Thank you Fox again asking me to post my comments.

  5. Susannah Fox says:

    Thank you, Laila! We really appreciate your comments.

  6. Judith Feder says:

    Laila, my anecdotal experience on a number of breast cancer online communities is that we have had members who are Muslim, but most often living outside of their native country. Also, women living in the Middle East, but often not native to those countries (i.e., an English ex-pat living on Cyprus, etc.) I think it would be incredible if we could have Jordanian women and others join our communities. I would imagine it could be helpful for women who, for many reasons, find it difficult to find in-person communities. We’d also learn a lot from experiences and medical practices. I expect language is a barrier in some cases. For those for who it is not a barrier, perhaps it would be possible to post on the Web and in hosptials/oncology offices links to established communities? I found my online “homes” through word of mouth, and I think that’s the case for many patients.

Leave a Reply