Prime Time Replay:
Dr. Richard Marlink
on AIDS Research and the Web
MsgId: *breakthru_medicine(8)
Date: Wed Oct 16 20:59:59 EDT 1996
From: moderator At: 206.80.176.51
Good evening, and welcome to Breakthrough Medicine. Tonight I'll be talking to Dr. Richard Marlink, executive director of the Harvard AIDS Institute.
MsgId: *breakthru_medicine(9)
Date: Wed Oct 16 21:00:21 EDT 1996
From: Dr_Richard_Marlink At: 206.80.175.78
I'm the executive director of the Harvard AIDS Institute and a hematologist/oncologist.
MsgId: *breakthru_medicine(10)
Date: Wed Oct 16 21:01:54 EDT 1996
From: moderator At: 206.80.176.51
Dr. Marlink, let's start by talking about the mission of your institute.
MsgId: *breakthru_medicine(11)
Date: Wed Oct 16 21:04:15 EDT 1996
From: Dr_Richard_Marlink At: 206.80.175.78
The Harvard AIDS Institute's mission is conduct and catalyze research to end the world-wide AIDS epidemic. We do that through basic laboratory research, clinical science research, epidemiology, public health and prevention research, and social science and policy advocacy.
MsgId: *breakthru_medicine(12)
Date: Wed Oct 16 21:06:04 EDT 1996
From: moderator At: 206.80.176.51
I understand your institute has also launched ProCAARE, an electronic conference to connect people world wide who are doing AIDS research. Could we talk about your institute's involvement in this? g/a
MsgId: *breakthru_medicine(13)
Date: Wed Oct 16 21:09:57 EDT 1996
From: Dr_Richard_Marlink At: 206.80.175.78
Yes, ProCAARE is an acronym for Program for Collaboration Against AIDS and Related Epidemics. It was initially modelled after ProMED which is an initial electronic e-mail conference which attempts to monitor emerging diseases world-wide. We at the Harvard AIDS Institute wanted to emphasize that we have an emerging disease creating a world-wide epidemic, i.e., AIDS and felt that such a continuous electronic e-mail conference, focussed on AIDS in particular, would benefit researchers and clinicians and patients, especially in developing country settings.ProCAARE can be subscribed to by anyone, but it is a scientifically-monitored e-mail conference that is technically administered by SatelLife. Information about this unique international conference which now ties in over 35 different countries can be found at http://www.healthnet.org/programs/procaare.html.
MsgId: *breakthru_medicine(15)
Date: Wed Oct 16 21:15:25 EDT 1996
From: moderator At: 206.80.176.51
And what has the response been from researchers who you could assume might need it most--people far from large, established medical institutions?
MsgId: *breakthru_medicine(16)
Date: Wed Oct 16 21:20:45 EDT 1996
From: Dr_Richard_Marlink At: 206.80.175.78
When this conference, or this format of the continuous e-mail conferencing, works, it is really quite gratifying and can end up having a life of its own. Let me give you an example: We post up-to-date abstracts of scientific literature and new findings and encourage information exchange between subscribers related to these new research findings.We also encourage enquiries from subscribers around the world and even prior to launching the conference, which we did at the international AIDS conference in Vancouver this last summer, we had an inquiry from a public health official in Pakistan who asked if anyone on the conference network had had experience on doing research or in setting up home care programs for people with AIDS, and within 24 hours, we had responses from Puerto Rico and Zambia explaining their research and unpublished reports on how their home care experience had been developed.
Just to add a note: This e-mail conferencing, and e-mail in general, will revolutionize developing country access to information and exchange of information. This will be a huge advantage for the public health of these economically-disadvantaged areas. /ga
MsgId: *breakthru_medicine(19)
Date: Wed Oct 16 21:24:30 EDT 1996
From: moderator At: 206.80.176.51
Let's talk a little about who is answering the questions at your end. Are you directly involved in funneling inquiries to the proper specialists?
MsgId: *breakthru_medicine(20)
Date: Wed Oct 16 21:28:57 EDT 1996
From: Dr_Richard_Marlink At: 206.80.175.78
ProCAARE itself does not claim to be able to answer all the questions. It's trying to be the scientific and medical facilitator -- to monitor questions and conversations concerning specific AIDS-related topics and present them to a larger community on the network. We do have a blue-ribbon steering committee of key AIDS researchers and public health specialists from around the world, including Dr. Peter Piot who directs the UNAIDS program in Geneva, Dr. Helene Gayle who runs the AIDS effort for this country, and premier AIDS researchers in developing countries such as Dr. Souleymane Mboup from Senegal.
MsgId: *breakthru_medicine(21)
Date: Wed Oct 16 21:34:01 EDT 1996
From: moderator At: 206.80.176.51
In addition to establishing ProCAARE, you are also directing projects at the Harvard AIDS Institute. What are some of your major projects coming up?
MsgId: *breakthru_medicine(23)
Date: Wed Oct 16 21:40:15 EDT 1996
From: Dr_Richard_Marlink At: 206.80.175.78
Probably the most urgent and immediate project is focussed back on our country, and that is a project called "Leading for Life." This is a unique summit meeting of national African-American leaders from all walks of life who have taken the courageous stand to say that AIDS must be addressed, and is reaching crisis proportions, in African-American communities. This summit meeting will take place next week, October 22nd, here at the Harvard AIDS Institute and will involve African-American leaders ranging from Marion Wright Edelman, Julian Bond, George Strait, Dr. David Satcher to key AIDS activists such as Phill Wilson and Mario Cooper.The Harvard AIDS Institute projects that in less than four years, more than 50% of AIDS cases in this country will be African-American. This means, in numerical terms, that by the year 2000 (just around the corner), an African-American will be nine times as likely to acquire an AIDS diagnosis than a non-African-American. AIDS and acquiring HIV have nothing to do with being in a specific racial or ethnic group, rather this disproportionate impact for African-Americans is a reflection of AIDS disproportionately affecting the socio-economically disadvantaged here or anywhere throughout the world.
Information on this unique summit and subsequent "Leading for Life" campaign effort can be found on our home page for the Harvard AIDS Institute: http://www.hsph.harvard.edu/hai.html.
MsgId: *breakthru_medicine(26)
Date: Wed Oct 16 21:47:15 EDT 1996
From: moderator At: 206.80.176.51
So the exchange of information and ideas seems to be a key aspect in the fight against AIDS. Have researchers in America used your resources for sharing data?
MsgId: *breakthru_medicine(28)
Date: Wed Oct 16 21:52:38 EDT 1996
From: Dr_Richard_Marlink At: 206.80.175.78
No. This has been a big disappointment. The incentive in scientific research is usually to establish a new discovery and to establish that you or your group made that new discovery. Electronic publishing can establish that just like print publishing, but the electronic medium has not changed the nature of human beings and the nature and business of scientific and medical research.A quick note: We set up our web site with the philosophy that the researcher, whether basic, clinical, or social science researcher, could use some organization of useful sites or tools available on the 'net. We also felt we should post useful or unique conference findings and data. With this in mind, we have channelled our web site to be focussed toward the clinical and research audience, not necessarily the individual person looking for the best and latest specific clinical trial or clinical breakthrough. We send those inquirers to the useful AIDS treatment sites already established by other reputable groups.
MsgId: *breakthru_medicine(30)
Date: Wed Oct 16 21:58:40 EDT 1996
From: moderator At: 206.80.176.51
I'm sure that the continued presence, and success, of your forums will prompt more researchers to use the medium. Do you find individuals are accessing the information you provide, and, even if it isn't exactly clinical in nature, they are using it as a stepping stone for reaching decisions they have to make about their own treatment?
MsgId: *breakthru_medicine(32)
Date: Wed Oct 16 22:07:24 EDT 1996
From: Dr_Richard_Marlink At: 206.80.175.78
Our web site does not have the resources to know exactly who is accessing it. We know from our feedback that the range of individuals is quite wide and those that do give us feedback are very positive about the information contained or about the sites we send them to, according to our outlined topics of AIDS and AIDS-related research. We've organized the site first around the four "tracks" of an international AIDS conference, which cover 1) basic science, 2) clinical science, 3) epidemiology, and 4) social science and policy.Then we've gathered what we feel are useful tools for the researcher, especially one interested in interfacing with the US government, or with private industry. We were fortunate to have the services of an electronic librarian who's also a real librarian who coordinated the AIDS library online in Philadelphia to help us coordinate this effort. Her name is Ms. Lauren Ferguson.
MsgId: *breakthru_medicine(34)
Date: Wed Oct 16 22:11:58 EDT 1996
From: moderator At: 206.80.176.51
Dr. Marlink, we wish you success with your summit, "Leading for Life." Thank you for joining us this evening on Breakthrough Medicine.
MsgId: *breakthru_medicine(35)
Date: Wed Oct 16 22:13:24 EDT 1996
From: Dr_Richard_Marlink At: 206.80.175.78
Thank you, Ms. Lebwohl, for having me. I very much appreciate the effort OMNI Online is doing to keep us all up-to-date.
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