Spotlight on the Information Resource Center

communityreply@lls.org — Tue, 24 Mar 2009 14:07:42 GMT

his last week we sat down with Liz, one of our Information Specialists in the Information Resource Center (IRC). Liz has worked at The Leukemia & Lymphoma Society (LLS) for nearly two years interacting directly with patients, caregivers, medical professionals, and anyone else that contacts us with questions about blood cancer.

What made you interested in working at LLS?

Previously I worked at a hospital with a variety of patients, but I found that I was interested in working more closely with cancer patients. The IRC is a great environment for this because I am able to work with blood cancer patients and their families on a daily basis.

Can you describe what the IRC is and how it benefits people?

It’s a call center where people can call for information about blood cancers, resources on the local and national level, support services and education materials. It empowers patients and family members with information about their diagnosis or other needs when they don’t know where else to turn.

What is an Information Specialist, and what do you do in that role?

Our Information Specialists come from backgrounds of social work and public health, and we all have Masters degrees. We provide not only practical resources to the patient or caregiver, but we also provide emotional support because of our one-on-one interaction. We also guide callers through concerns they are having with doctors, treatments, symptoms and side effects.

If someone is considering calling the IRC, but isn’t sure what to expect, can you share what usually happens?

Well, first we ask a few questions in order to better assist the caller. We start our by asking for our caller’s phone number in case the phone call is disconnected. We then find out if there is a diagnosis, and when that diagnosis was first made. At that point, we are ready to find out more of what our caller needs from us. Once we have a better understanding of our caller’s situation, we can provide support and resources or help brainstorm the next steps to help them focus on finding a solution. Usually we will provide them with a local LLS chapter contact and the number in case there are resources in their area that they can use.

Do many people who call or email have similar concerns?

Yes. A lot of problems that patients face are universal – concerns about insurance coverage (How am I going to pay for this? I don’t have insurance, so how do I get treatment?), financial questions, concerns about their treatment (ranging from doctor-patient relationship issues to getting to treatment), or when it’s appropriate to get a second opinion. We also get emails or phone calls about things in the news, but those questions are not as frequent.

If someone asks you what you think about the diagnosis or treatment they are receiving, how do you respond?

I will tell them that treatment is very individualized. There are a variety of drugs and therapies for blood cancers, and no one treatment is the same. A patient’s individual health issues can also have an impact on what kind of treatment they receive. For example, if they have a heart problem they will have a different treatment plan than someone without heart problems. I always share standard treatment information, and if it’s needed I’ll suggest that they get a second opinion from a doctor other than their own.

If someone doesn’t speak English or doesn’t live in the United States or Canada, can they still contact the IRC and get help that is relevant to their needs?

Any language is supported with a translation service, and we do have specialists that speak Spanish and French. We also will refer people to other U.S. based organizations that deal with patients and families internationally.

How quickly can someone expect to hear back from the IRC if they have to leave a message?

If they call and leave a message, they can expect to hear back from us by the end of the next business day and it’s the same with email. We’re here Monday through Friday, so if they leave a message on Friday then they will get a response from us on Monday. Mail will be responded to promptly, so they should see something in the mail in three to five days.

Would you recommend any other ways for people to learn about the IRC?

If you have a question about a blood cancer, the Information Resource Center is available to speak with callers Monday through Friday from 9am to 6pm EST, and 10am to 5pm ET the same days for live online chat. You can reach the IRC at (800) 955-4572 or by email. Learn more about some of our other IRC staff and how they handle patient and caregiver questions on My Clinical Trials Journey, an interactive website.

The Leukemia & Lymphoma Society Innovates for 60 Years

communityreply@lls.org — Tue, 13 Jan 2009 20:20:10 GMT

If you are a regular visitor to www.LLS.org you’ll notice that our logo has undergone a change in honor of our 60th anniversary. That’s right – in 1949 The Leukemia & Lymphoma Society (LLS) was created by a family who had lost their 16-year-old son to leukemia just a short five years prior. At the time they named the organization after their son, calling it the Robert Roesler de Villiers Foundation.

In the sixty years since first working out of a small office on Wall Street, LLS has become the leading nationwide organization in the fight against blood cancers. No longer are leukemia, lymphoma and myeloma considered almost fatal diseases as they once were in 1949. Through innovative efforts LLS has helped to significantly increase survival rates of these blood cancers, and remains committed to stay on the forefront in the following areas:

Research – Our new Therapy Acceleration Program allows us to help facilitate the rapid development of promising new therapies that might otherwise go undeveloped.

Patient Services – 80,000 inquiries about blood cancers, treatments, resources and other critical issues were handled by our Information Resource Center in 2008 alone.

Advocacy – We have championed the first legislation in the country to provide neuro-psychological testing for pediatric cancer survivors.

Fundraising – Team In Training® (TNT) has raised almost $1 billion for blood cancer research and patient services in the 20 years that it has existed, and continues to be a strong fundraising force with the active support of its participants.

We have created a special website dedicated to LLS’s 60th anniversary where you can learn more about the innovations we’ve made and the people we have directly impacted on this journey. Visit now at www.LLS.org/innovation, and you’ll discover how and why we’re on the cutting edge.

Has The Leukemia & Lymphoma Society helped you or a loved one? Tell us about your story on our online community. Note: You’ll need to create a free account in order to post your story.

Want to give back? Make a safe and secure online donation to help us continue our mission of eradicating blood cancers.

The Leukemia & Lymphoma Society Blog

Spotlight on the Information Resource Center

The Leukemia & Lymphoma Society Innovates for 60 Years