Patient Representation at Upcoming ASH Meeting

[Guest guest]

Hi all - Thought you would enjoy an article I wrote this week about patient

advocacy at the upcoming ASH meeting in Orlando. We will be well represented!

Regards,

Pat in Phoenix

Lights, Camera, Action: Patient Reporters Are Empowering Others

By Pat Elliott November 28, 2010

Link:

http://www.empowher.com/cancer/content/lights-camera-action-patient-reporters-ar\

e-empowering-others?page=0,0

The top information sources for patients with a serious illness today are clear

– their medical team and the Internet. The most active online are those living

with chronic disease. Some 75 percent of these patients say their last health

search affected a decision about how to treat a condition, compared with 55

percent of other e-patients, according to a Pew Research study.

The shift to online resources for healthcare information has also given birth to

a new breed of " citizen " journalist, the patient reporter. Patients and

caregivers are going directly to the information sources themselves, bringing

along questions from their community and taking back vital, actionable

knowledge.

During the past decade, increasing numbers of patients and caregivers have

attended medical conferences where professionals gather to learn the latest

clinical trial outcomes, new and promising treatments, best practices in

managing cases and more. Once the province of medical professionals and those

seeking to influence them, including pharmaceutical firms and medical supply

vendors, medical conferences are now adding formal and informal patient forums

to the agenda, and are starting to give patients a seat at the table too.

Typically the " news " from these conferences has been distributed via clinical

and trade media, often in scientific jargon hard for lay people to understand or

in financial jargon more focused on the profit potential of a new treatment than

the actual impact on patients. Consumer media typically picks up the most

dramatic announcements or those impacting the largest number of patients. The

result for most patients is that it can take months and even years for the

information from these conferences to filter down to patient education materials

in easily understood language.

That's changing for many chronic conditions. The Internet enables anyone with a

keyboard to communicate with fellow patients right away.

The advent of inexpensive, high quality digital cameras enables patient

advocates to interview top experts in an unedited fashion and ask questions that

get to the heart of what's on the patient's mind as they deal with living with

their medical condition on a daily basis and also seek long term solutions.

A case in point is the American Society of Hematology Meeting to be held

December 4 - 7, 2010 in Orlando, Florida. The four-day meeting draws more than

21,000 people and is considered the premier annual education and scientific

event in the field of hematology (blood disorders). Blood cancer survivors will

be there as patient reporters, bringing " news " to fellow patients that no other

media will cover.

Chronic Lymphocytic Leukemia (CLL) patient reporters will include two survivors

- Schorr, founder of Patient Power and Gretchen Cover who manages the

3,000 member CLL list for the Association of Cancer Online Resources. Multiple

Myeloma survivor Mike Katz will be there for the International Myeloma

Foundation.

Schorr, a former medical journalist, says this is how it should be. " Patients

want transparency and by being on the inside of medical conventions we are

getting it. Yay! " He adds, " We are a new force to contend with. It is becoming

less about doctor-to-doctor communication and more about patient-to-patient or

expert-to-patient-to-patient. "

The ASH Conference includes top international speakers which attracts top

international patient advocates whose participation enables cutting edge

clinical information to go back to their home countries. To understand this,

consider the rare blood cancer Chronic Myelogenous Leukemia (also known as

Chronic Myelocytic Leukemia or CML) which makes up 0.3 per cent of all cancers.

The 4,870 new cases expected in the U.S. this year seems like a small number

until you learn that only 249 new cases are expected in Australia.

An advocate from Australia will be at ASH this year, as well as CML patient

advocates from Canada, Venezuela, Israel, Germany, India, Malaysia and several

other countries.

This Article

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The impact doesn't stop there. Reports provided in English on the 2010 ASH

Conference on an international site for CML patient advocates will be translated

into languages including Hebrew, German, Russian, Estonian and Spanish so that

even more people can share and benefit from the knowledge.

In the U.S., National CML Society Executive Director Greg s, says the key

benefit of patient participation is empowerment. " We can bring breaking news

directly to those most affected, empowering them to become their own best

advocate. " He adds, " It's more important than ever for patients and caregivers

to take an active role in understanding the subtleties of their disease. Medical

conferences such as ASH provide deep insights into emerging therapies and

treatment protocols that could take a long time to trickle down to the local

treatment facility. "