GUEST COLUMN
|
February 2009
Meet Our Featured Guest Columnist:
Julia Royall
Julia Royall is chief of international programs at the National Library of Medicine. As director of the Multilateral Initiative on Malaria (MIM) Communications Network she led an initiative to launch fast and reliable Internet connectivity all across Africa, to provide access to current medical literature.
Q: What does "health and human rights" mean to you?
A: Earlier this week, I was passing by an IDP (Internally Displaced Persons) camp in Gulu in the North of Uganda, an area that has been torn by war for the last 20 years. Out from the huts, built close together and seeming to stretch on forever, ran a small child, coming to the roadside to watch the vehicles passing by on the long road back to Kampala. I photographed her so she was captured in time, but her image continued to play over and over again in my mind in full motion. What rights does this child have? How will she have a future beyond "feedings" by USAID? How will she receive health care? Be educated? Be able to think and move beyond the camp--where she was born and all she has known. Through my particular spectacles, I see good health as critical to this little girl being able to feed, clothe, and shelter herself. If she is not healthy, she cannot go to school or work or envision anything beyond the limitations of the camp. Is not good health the bedrock on which one can build a better life? A better world? But back to Gulu: No matter what else she makes of life, should not she at least have a spot on the playing field?
Another image was caught by my camera several years ago in Lambarene, Gabon at the Albert Schweitzer Hospital. My colleague Dr. Saddou Issifou had been called away from the research lab where we were talking to treat a child with cerebral malaria who had been admitted to the hospital. When we arrived, the boy was lying in bed but rose up to shake my hand. His movements and demeanor were unnatural, those of a very sick child. The doctor examined him and prescribed treatment. As we walked away, Saddou could see that I was very worried, so he reassured me we could return the next day to check on the young patient. The next day, I found Alijean sitting up in bed with an IV in his arm and eating a baguette. His mother sat nearby. Everyone was smiling. A deadly disease had been held off by relatively simple treatment. I asked Alijean and his mother if I could take a photo. They agreed. The result is a memory of a beautiful child being treated. I have underscored these words, because I don't believe we can eradicate all the diseases which prey on poverty stricken areas of the world. However, while waiting for the magic bullet of a vaccine, we can prevent and treat, often very cheaply. Again, doesn't Alijean have a right to a spot on the playing field?
Q: How/why did you get involved in global health issues?
A: I believe I was originally influenced by my father who spent two years in India during World War II. Rather than keep to the world of the army camp, he ventured out into Calcutta, witnessing scenes of great beauty and great poverty and even attending Mahatma Gandhi's prayer meetings. One of my early memories is poring over the elegant and urgent black and white photographs he took. As I grew up, visitors from other countries were always welcomed to our dinner table - whether it was a student from Denmark or a teacher who had fled from Cuba as a refugee. All around me along the southern coast of South Carolina were African-American communities, holding onto their African origins and culture, some of which became mine and which I would carry forever.
My first career was not in global health but in the theatre--one which encouraged communities to share their histories and stories with a wider audience. Sometimes that audience was international as the stories reverberated across cultures and continents. One example was a play based on reminiscences of retired textile workers in the north of England. We used this play as a way to trace the movement of the textile industry from England to New England to the South and finally "off shore" to Hong Kong where social workers used the techniques we shared with them to communicate community concerns to the government. At each stop, communities were encouraged to capture their own memories, tell their own stories and present them in live or written form.
Some years later, when I had an opportunity to get involved with a very young company using a small satellite to deliver health information to Africa, I went for it. SatelLife had been conceived by International Physicians for the Prevention of Nuclear War (IPPNW) as a way to draw doctors from the southern hemisphere into the global dialog of health and peace. (IPPNW had recently won the Nobel Peace Prize for its efforts to engage physicians from the then USSR in global dialog.) At the time (1990) the Internet was also very young. In all of sub-Saharan Africa, there was only one dial-up connection - out of Rhodes, South AfricA: The challenge was to provide access to a tool which was critical to communication on a continent where land lines were practically useless as well as access to medical literature. I was passionate about the rights of African researchers and health professionals to have access to the same information resources as their colleagues in other parts of the world. I also believed that although the tool itself would not solve problems, it would give people a way to problem-solve together. In other words, African research, experience, ideas and stories were an important voice to be included in the global dialog. The dialog needed to be two-way, and change needed to include the health professionals, researchers, policy makers and the community. These ideas have been the foundation to my work as a facilitator.
In 1997, the National Library of Medicine and the National Institutes of Health lent considerable support to the Multilateral Initiative on Malaria. I was recruited by NLM to respond to African researchers' desire for access to the Internet and to medical literature. Together, we created the Multilateral Initiative on Malaria Communication Network (MIMCom), working site by site with the particular activities and needs of each. Our research has shown that this information technology intervention has improved the professional performance of African scientists as well as the research sites themselves. (Royall J, Schayk I, Bennett M, Kamau N, Alilio M. Crossing the Digital Divide: the Contribution of Information Technology to the Professional Performance of Malaria Researchers in Africa African Health Sciences, 5 (3), 2005, pp. 246-254.)
Locations of sites where NLM has assisted: https://www.nlm.nih.gov/mimcom/locations.html
NLM website for malaria researchers: www.nlm.nih.gov/mimcom
Following NLM's lead in reaching the end user, we are now creating MedlinePlus African tutorials www.nlm.nih.gov/medlineplus/africa/
These tutorials are created within the African context by African doctors, medical students, artists, and communities. Can an information technology intervention make a difference in the morbidity and mortality of malaria in Mifumi village in Uganda? Stay tuned.
So, how did I get involved in global health issues? I guess you can say I used my skills, following my nose, my calling, my sense of equity, and my passion.
Q: How can science and the exchange of information help in the campaign against malaria?
A: A study we carried out five years ago showed that information technology (access to Internet and medical literature) can make a difference in the professional performance of malaria researchers in Africa. We examined the use of IT by scientists, students, and administrative personnel to facilitate communication, retrieve information, obtain documents, write proposals, and prepare papers for publication. All of these sounds like simple and obvious tasks. Can you imagine trying to conduct research, and each of these proving a huge challenge?
The speed with which simple tasks now can be carried out, thus saving time, energy, and money, appears to be the most important result of enhanced connectivity at the participating sites. The new facility has, within limits, made a positive contribution to researchers' productivity and efficiency and, subsequently, to each site's research agenda. Further, enhanced connectivity and access to information have affected each site's financial bottom line through savings in areas such as transportation related to communication, telephone and facsimile transmissions, and ordering supplies and by supporting development and submission of research grant applications. Respondents to our survey mentioned the importance of being able to communicate with donors in a timely fashion, of being able to collaborate effectively with others on proposals, and finally, to submit proposals by the appointed deadline.
Access to the Internet enables rapid communication between investigators working at different research sites as well as access to online literature and data. Subsequent development of electronic networks could promote the use of common databases to facilitate research efforts at multiple sites across the continent.
Although the access to the Internet and information which was envisioned in Dakar at the first meeting of the Multilateral Initiative on Malaria has been realized for many researchers, African scientists' full participation in the scientific community is still evolving.
To what extent does this information technology (IT) intervention translate into a change in the disease burden of malaria? Will researchers in Africa be able to use the tool in more innovative ways than their colleagues have employed it in other parts of the world? Will they use the connectivity to create collaborations among African researchers in support of common interests that they then move forward together? Next steps are burdened by models from the past which support hierarchical structures competing through the withholding of data and information.
The challenge for African researchers involves an enormous leap of faith and a mastery of basic research skills, but the rewards could be great. The promise of IT in malaria research in Africa holds with it the key for capacity building, a leveling of the playing field in international research, and a whole new way of doing science.
The research we've carried out is just the first step in a broader discussion of critical issues addressing the obvious inequity of access to the benefits of IT. It is important to continue research which addresses the question: Can an IT intervention make a difference in the morbidity and mortality of malaria? At present, these findings can be used by research sites and principal investigators in their efforts with funding organizations to make their current IT sustainable and expandable as required. The findings also can be used by consortia such as the Multilateral Initiative on Malaria as they work proactively to promote interaction among IT, research, and better health with governments in Africa (i.e., regulatory bodies, telephone company monopolies, ministries of health, and policy makers), foundations, corporations, and international aid organizations. IT is critical to widening the circle to include African researchers as part of the international scientific community.
Q: Describe some of the successes you have seen in the response to malaria.
A: The Internet connectivity and access to information provided by NLM's MIMCom project have become a dynamic part of the research process in Africa. For researchers, the Internet connection to colleagues and to current information has gone a long way toward addressing the distances of time and space that are part and parcel of research in remote endemic areas. Electronic communication has enabled research teams to engage in discussions with colleagues in other parts of the world and participate in real time problem-solving; coordinate research activities; store information; share information; search for literature; submit manuscripts for publication; and send research proposals to funding agencies. Electronic communication also has made possible the provision of long distance educational/training activities and improved communication between students and supervisors.
MIMCom has helped remove geographic as well as intellectual isolation - among the greatest challenges faced by researchers in the sites reviewed. Isolation for these researchers has meant not only difficulty or inconvenience but also a low sense of self-esteem when relating to colleagues in other parts of the world. As a result of links to the Internet, researchers are beginning to join the greater international scientific community online.
Testimony by Dr. Andrew Githeko of Kenya Medical Research Institute: https://www.nlm.nih.gov/mimcom/interview/interview.html
Q: What are some of the challenges?
A: From my vantage point in ICT, malaria is preventable and curable, but it presents a myriad of challenges to traditional approaches. The disease itself is complex; drugs are expensive, resistance is rampant and compliance a problem. Diagnosis is difficult. DDT and sprays are controversial although assessment where they are being implemented will provide useful information about their future. Insecticide Treated Nets (ITNs)? In my recent conversation with the head of a national malaria control program in a malaria endemic country where malaria is the number one health burden, he didn't have much faith in them - the jury is still out. In the vaccine world, there is some progress, and the work of Pedro Alonso in Manhica, Mozambique is encouraging.
Public education has a long way to go to encourage prevention measures. If it is not understood that malaria comes from the mosquito vector - not mangoes or maize - or if the right prevention health message isn't connected with malaria (i.e., malaria is not prevented by boiling water or using latrines), then public education, no matter how slick the posters and brochures, has failed. Public education must be presented in formats that engage the user and acknowledge the user's beliefs about disease.
We must continue to build capacity in the African research community, so the world benefits from the work of scientists and health professionals living and working in endemic areas.
Q: How can young people make a difference?
A:
Thoughts on how young people can make a difference:
Talk with people who have been involved in international work. Find a mentor.
Through your mentor and your own research, find opportunities to volunteer in developing countries.
Make sure the opportunity allows you to listen to and respond to people on the ground, rather than simply implement an agenda imposed from a "donor" country. You should be there to facilitate what they are trying to do, not to get them to do what you want them to do.
Listen to all people--not as gospel but as interesting information. They are teaching you.
Work hard and make every attempt to follow up and finish what you start--it's easy to feel discouraged and give up.
Enjoy working with your African colleagues--they are the best and can teach you so much!
Read the latest news but also read literature.
Try not to be a tourist--get involved. Tourism takes up valuable time of those interesting folks you're visiting.
Be sure to see everything they want to show you.
You're learning, even when it's uncomfortable.
If you get hooked, be prepared to stay involved for the long haul--that's how you will see change, make friends and colleagues, and feel satisfaction.
When you return home, be an advocate--tell your story to anyone who will listen. Make sure they understand you feel privileged to do this work!
A: Earlier this week, I was passing by an IDP (Internally Displaced Persons) camp in Gulu in the North of Uganda, an area that has been torn by war for the last 20 years. Out from the huts, built close together and seeming to stretch on forever, ran a small child, coming to the roadside to watch the vehicles passing by on the long road back to Kampala. I photographed her so she was captured in time, but her image continued to play over and over again in my mind in full motion. What rights does this child have? How will she have a future beyond "feedings" by USAID? How will she receive health care? Be educated? Be able to think and move beyond the camp--where she was born and all she has known. Through my particular spectacles, I see good health as critical to this little girl being able to feed, clothe, and shelter herself. If she is not healthy, she cannot go to school or work or envision anything beyond the limitations of the camp. Is not good health the bedrock on which one can build a better life? A better world? But back to Gulu: No matter what else she makes of life, should not she at least have a spot on the playing field?
Another image was caught by my camera several years ago in Lambarene, Gabon at the Albert Schweitzer Hospital. My colleague Dr. Saddou Issifou had been called away from the research lab where we were talking to treat a child with cerebral malaria who had been admitted to the hospital. When we arrived, the boy was lying in bed but rose up to shake my hand. His movements and demeanor were unnatural, those of a very sick child. The doctor examined him and prescribed treatment. As we walked away, Saddou could see that I was very worried, so he reassured me we could return the next day to check on the young patient. The next day, I found Alijean sitting up in bed with an IV in his arm and eating a baguette. His mother sat nearby. Everyone was smiling. A deadly disease had been held off by relatively simple treatment. I asked Alijean and his mother if I could take a photo. They agreed. The result is a memory of a beautiful child being treated. I have underscored these words, because I don't believe we can eradicate all the diseases which prey on poverty stricken areas of the world. However, while waiting for the magic bullet of a vaccine, we can prevent and treat, often very cheaply. Again, doesn't Alijean have a right to a spot on the playing field?
Q: How/why did you get involved in global health issues?
A: I believe I was originally influenced by my father who spent two years in India during World War II. Rather than keep to the world of the army camp, he ventured out into Calcutta, witnessing scenes of great beauty and great poverty and even attending Mahatma Gandhi's prayer meetings. One of my early memories is poring over the elegant and urgent black and white photographs he took. As I grew up, visitors from other countries were always welcomed to our dinner table - whether it was a student from Denmark or a teacher who had fled from Cuba as a refugee. All around me along the southern coast of South Carolina were African-American communities, holding onto their African origins and culture, some of which became mine and which I would carry forever.
My first career was not in global health but in the theatre--one which encouraged communities to share their histories and stories with a wider audience. Sometimes that audience was international as the stories reverberated across cultures and continents. One example was a play based on reminiscences of retired textile workers in the north of England. We used this play as a way to trace the movement of the textile industry from England to New England to the South and finally "off shore" to Hong Kong where social workers used the techniques we shared with them to communicate community concerns to the government. At each stop, communities were encouraged to capture their own memories, tell their own stories and present them in live or written form.
Some years later, when I had an opportunity to get involved with a very young company using a small satellite to deliver health information to Africa, I went for it. SatelLife had been conceived by International Physicians for the Prevention of Nuclear War (IPPNW) as a way to draw doctors from the southern hemisphere into the global dialog of health and peace. (IPPNW had recently won the Nobel Peace Prize for its efforts to engage physicians from the then USSR in global dialog.) At the time (1990) the Internet was also very young. In all of sub-Saharan Africa, there was only one dial-up connection - out of Rhodes, South AfricA: The challenge was to provide access to a tool which was critical to communication on a continent where land lines were practically useless as well as access to medical literature. I was passionate about the rights of African researchers and health professionals to have access to the same information resources as their colleagues in other parts of the world. I also believed that although the tool itself would not solve problems, it would give people a way to problem-solve together. In other words, African research, experience, ideas and stories were an important voice to be included in the global dialog. The dialog needed to be two-way, and change needed to include the health professionals, researchers, policy makers and the community. These ideas have been the foundation to my work as a facilitator.
In 1997, the National Library of Medicine and the National Institutes of Health lent considerable support to the Multilateral Initiative on Malaria. I was recruited by NLM to respond to African researchers' desire for access to the Internet and to medical literature. Together, we created the Multilateral Initiative on Malaria Communication Network (MIMCom), working site by site with the particular activities and needs of each. Our research has shown that this information technology intervention has improved the professional performance of African scientists as well as the research sites themselves. (Royall J, Schayk I, Bennett M, Kamau N, Alilio M. Crossing the Digital Divide: the Contribution of Information Technology to the Professional Performance of Malaria Researchers in Africa African Health Sciences, 5 (3), 2005, pp. 246-254.)
Locations of sites where NLM has assisted: https://www.nlm.nih.gov/mimcom/locations.html
NLM website for malaria researchers: www.nlm.nih.gov/mimcom
Following NLM's lead in reaching the end user, we are now creating MedlinePlus African tutorials www.nlm.nih.gov/medlineplus/africa/
These tutorials are created within the African context by African doctors, medical students, artists, and communities. Can an information technology intervention make a difference in the morbidity and mortality of malaria in Mifumi village in Uganda? Stay tuned.
So, how did I get involved in global health issues? I guess you can say I used my skills, following my nose, my calling, my sense of equity, and my passion.
Q: How can science and the exchange of information help in the campaign against malaria?
A: A study we carried out five years ago showed that information technology (access to Internet and medical literature) can make a difference in the professional performance of malaria researchers in Africa. We examined the use of IT by scientists, students, and administrative personnel to facilitate communication, retrieve information, obtain documents, write proposals, and prepare papers for publication. All of these sounds like simple and obvious tasks. Can you imagine trying to conduct research, and each of these proving a huge challenge?
The speed with which simple tasks now can be carried out, thus saving time, energy, and money, appears to be the most important result of enhanced connectivity at the participating sites. The new facility has, within limits, made a positive contribution to researchers' productivity and efficiency and, subsequently, to each site's research agenda. Further, enhanced connectivity and access to information have affected each site's financial bottom line through savings in areas such as transportation related to communication, telephone and facsimile transmissions, and ordering supplies and by supporting development and submission of research grant applications. Respondents to our survey mentioned the importance of being able to communicate with donors in a timely fashion, of being able to collaborate effectively with others on proposals, and finally, to submit proposals by the appointed deadline.
Access to the Internet enables rapid communication between investigators working at different research sites as well as access to online literature and data. Subsequent development of electronic networks could promote the use of common databases to facilitate research efforts at multiple sites across the continent.
Although the access to the Internet and information which was envisioned in Dakar at the first meeting of the Multilateral Initiative on Malaria has been realized for many researchers, African scientists' full participation in the scientific community is still evolving.
To what extent does this information technology (IT) intervention translate into a change in the disease burden of malaria? Will researchers in Africa be able to use the tool in more innovative ways than their colleagues have employed it in other parts of the world? Will they use the connectivity to create collaborations among African researchers in support of common interests that they then move forward together? Next steps are burdened by models from the past which support hierarchical structures competing through the withholding of data and information.
The challenge for African researchers involves an enormous leap of faith and a mastery of basic research skills, but the rewards could be great. The promise of IT in malaria research in Africa holds with it the key for capacity building, a leveling of the playing field in international research, and a whole new way of doing science.
The research we've carried out is just the first step in a broader discussion of critical issues addressing the obvious inequity of access to the benefits of IT. It is important to continue research which addresses the question: Can an IT intervention make a difference in the morbidity and mortality of malaria? At present, these findings can be used by research sites and principal investigators in their efforts with funding organizations to make their current IT sustainable and expandable as required. The findings also can be used by consortia such as the Multilateral Initiative on Malaria as they work proactively to promote interaction among IT, research, and better health with governments in Africa (i.e., regulatory bodies, telephone company monopolies, ministries of health, and policy makers), foundations, corporations, and international aid organizations. IT is critical to widening the circle to include African researchers as part of the international scientific community.
Q: Describe some of the successes you have seen in the response to malaria.
A: The Internet connectivity and access to information provided by NLM's MIMCom project have become a dynamic part of the research process in Africa. For researchers, the Internet connection to colleagues and to current information has gone a long way toward addressing the distances of time and space that are part and parcel of research in remote endemic areas. Electronic communication has enabled research teams to engage in discussions with colleagues in other parts of the world and participate in real time problem-solving; coordinate research activities; store information; share information; search for literature; submit manuscripts for publication; and send research proposals to funding agencies. Electronic communication also has made possible the provision of long distance educational/training activities and improved communication between students and supervisors.
MIMCom has helped remove geographic as well as intellectual isolation - among the greatest challenges faced by researchers in the sites reviewed. Isolation for these researchers has meant not only difficulty or inconvenience but also a low sense of self-esteem when relating to colleagues in other parts of the world. As a result of links to the Internet, researchers are beginning to join the greater international scientific community online.
Testimony by Dr. Andrew Githeko of Kenya Medical Research Institute: https://www.nlm.nih.gov/mimcom/interview/interview.html
Q: What are some of the challenges?
A: From my vantage point in ICT, malaria is preventable and curable, but it presents a myriad of challenges to traditional approaches. The disease itself is complex; drugs are expensive, resistance is rampant and compliance a problem. Diagnosis is difficult. DDT and sprays are controversial although assessment where they are being implemented will provide useful information about their future. Insecticide Treated Nets (ITNs)? In my recent conversation with the head of a national malaria control program in a malaria endemic country where malaria is the number one health burden, he didn't have much faith in them - the jury is still out. In the vaccine world, there is some progress, and the work of Pedro Alonso in Manhica, Mozambique is encouraging.
Public education has a long way to go to encourage prevention measures. If it is not understood that malaria comes from the mosquito vector - not mangoes or maize - or if the right prevention health message isn't connected with malaria (i.e., malaria is not prevented by boiling water or using latrines), then public education, no matter how slick the posters and brochures, has failed. Public education must be presented in formats that engage the user and acknowledge the user's beliefs about disease.
We must continue to build capacity in the African research community, so the world benefits from the work of scientists and health professionals living and working in endemic areas.
Q: How can young people make a difference?
A:
Thoughts on how young people can make a difference:
Talk with people who have been involved in international work. Find a mentor.
Through your mentor and your own research, find opportunities to volunteer in developing countries.
Make sure the opportunity allows you to listen to and respond to people on the ground, rather than simply implement an agenda imposed from a "donor" country. You should be there to facilitate what they are trying to do, not to get them to do what you want them to do.
Listen to all people--not as gospel but as interesting information. They are teaching you.
Work hard and make every attempt to follow up and finish what you start--it's easy to feel discouraged and give up.
Enjoy working with your African colleagues--they are the best and can teach you so much!
Read the latest news but also read literature.
Try not to be a tourist--get involved. Tourism takes up valuable time of those interesting folks you're visiting.
Be sure to see everything they want to show you.
You're learning, even when it's uncomfortable.
If you get hooked, be prepared to stay involved for the long haul--that's how you will see change, make friends and colleagues, and feel satisfaction.
When you return home, be an advocate--tell your story to anyone who will listen. Make sure they understand you feel privileged to do this work!