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SHARING REPRODUCTIVE HEALTH KNOWLEDGE: The role of health care information in promoting reproductive health
REPORT on a joint videoconference meeting of the HEALTH INFORMATION FORUM (HIF, UK) and the HEALTH INFORMATION AND PUBLICATIONS NETWORK (HIPNET, USA)
5th October 2004, at the Royal College of Physicians, London, UK, and Advance Africa, Arlington, Virginia, USA
BACKGROUND
Worldwide, more than 50 million women suffer from poor reproductive health and serious pregnancy-related illness and disability. And every year more than 500,000 women die from complications of pregnancy and childbirth. Women in Sub-Saharan Africa have a 1-in-16 lifetime risk of dying from maternal causes, compared with women in Europe, who have a 1-in-2,000 risk, and in North America, who have a 1-in-3,500 risk of dying. 2. 10 million children die each year, of whom more than 20% die in the perinatal period 3. More than 40 million adults and 5 million children are living with HIV/AIDS. 3 million die each year. [Source 1-3:
http://www.developmentgoals.org]
Midwives, nurses, primary health workers, traditional birth attendants, health promoters and others involved in reproductive health care are central to reduce mortality and morbidity worldwide. Their efforts are constrained by many complex factors: lack of drugs and equipment, transport and health systems infrastructure. But there is one relatively simple and neglected factor that continues to disable healthcare providers in low-resource settings: lack of access to relevant healthcare information and knowledge.
OBJECTIVES
This meeting provided a forum for discussion of the issues around access to relevant healthcare information. It was the first joint meeting of HIF and HIPNET and explored ways in which we might work together to improve access to reproductive health information.
WELCOME: Neil Pakenham-Walsh (Health Information Forum) and Beth Robinson (HIPNET)
KEYNOTE PRESENTATION by Nono Simelela, Director of Programmes, IPPF, UK
Dr Simelela argued that, despite much progress in access to information, much still needs to be done.
Key issues:
1. How can we meet the information needs of health care providers (particularly nurses, doctors, midwives and TBAs)?
2. How can we encourage translation of research into practice?
3. How can we ensure that information is not only accessible, but also used?
Some institutions have access to information, but it is often inappropriate information. Information is *slow* to reach those who need it most.
Main problems are information overload, information which is not user-friendly or in the wrong format. Dr Simelela suggested there are five audiences for us to work with:
1. Critical influencers (e.g. government and politicians) can be involved by signing treaties, lobbying international, multilateral and bilateral bodies or through public health resource allocation or agenda setting. Help government understand the role of information (use WHO or bilateral projects). Sometimes politicians do not understand science (e.g. HIV/AIDS). Give correct scientific information to key influencers so they can 'spread the word' correctly.
2. Researchers: Research is often driven by pharmaceutical companies, not by real need and not by government. Link academic research to policy development. Think about how research findings can be applied to local settings. Build capacity for researchers to communicate information to policy makers. Integrate best practice into existing systems (e.g. drug procurement). Gave example of Nevirapine (an anti-HIV drug), where health care providers wanted to procure it, but the procurement system was not supportive.
3. Health Managers: They determine resource allocations at the local level. Understand the obstacles health managers must overcome ( e.g. lack of resources at local level, lack of IT skills, brain drain, unsupportive environment, no electricity, poor roads or water).
4. Health providers: Many were trained when IT was not available and do not have IT-related skills. They are also least empowered with resources, power and connections (e.g. no time to read, no library, lack of support from superiors, huge workload at home and at work). Working conditions are an important enabling factor. In many workplaces, 2-3 nurses do all the work and then go home to very stressful family circumstances. Audiences #1, 2, and 3 influence what happens on the ground with #4.
5. Use regional, national and international networks to provide relevant and user-friendly information. That's us. We make information relevant and find local partners to work with. We provide capacity building.
US COMMENTS on issues raised by keynote address:
US contributors said that this highlighted their concern with:
- Reliability and relevance of information, e.g. Can't depend on internet resources alone. So need hard copies which are portable. This reinforces the continuing need for print materials.
UK COMMENTS on issues raised by keynote address:
- Local relevance (language, appropriateness, use of pictures) versus latest up-to-date information
- It is important to document local experiences and capture 'local voices'
- Working with strong local partners is important
- For policy change, encouraging public dialogue and discussion is important.
- International as well as local information is important.
- By joining with policy makers, disability rights campaigners changed practice on the ground.
Christine Kalume of HEALTHLINK WORLDWIDE:
- Explained how Healthlink Worldwide started out working on information for health care workers in resource poor settings. Has moved to documenting local experiences, facilitating discussion and dialogue.
- Healthlink Worldwide supports partners working to determine in-country info needs and how to best meet these needs.
- Healthlink Worldwide then shares the effective communications message which partners developed (eg experiential advocacy, memory-book work etc) with interested groups in both the north and south
- Healthlink Worldwide is also building a network of health info resource centres in developing countries through its Source programme. Source is also a valuable resource for practical health information from both the north and the south.
- Source www.asksource.info brings together relevant research from both the north and south through its QuickList Series.
Lou Compernolle on WHO's work with 20 partners on IMPLEMENTING BEST PRACTICES (IBP):
- Set up in 1999. Has a similar goal to Healthlink Worldwide of adapting knowledge to fit needs of people in the field.
- IBP is centred around country launches, performance improvement and leadership skills.
- Electronic archive of best practice. Best practice of the 20 partners located at one point.
- IBP ECS tries to create communities of practice for people to share local knowledge, backstopping done by partners. Experts respond to queries.
- Best practice compendium on IBP also available on CD-ROM.
- Main steps: Attract interest, reach audience, practice new info
Meenakshi Gautham from LONDON SCHOOL OF HYGIENE AND TROPICAL MEDICINE:
- Is completing 7-8 years of research on the information needs of traditional birth attendants (TBAs) in India, private practitioners
- Need to understand 'learning' situation of TBAs: low literacy, no electricity or computer, no postal address. So use local hub NGOs to reach out to them.
- Need to understand their actual information needs rather than what we think is appropriate. Example: We may think the most important message is hand-washing after childbirth. The TBA's most important need is to promote her skills and earn more money.
- Need to capture their interest first. We have to bridge gaps between our perceived ideas of their need for information and their real need for information.
From the USA:
- PATH: shared a curriculum with inner city group in Philadelphia. Proves that sometimes people can use something that was not actually developed for them to use.
- ADVANCE AFRICA: Samantha Ender described Advance Africa's Best Practices Compendium.
- POPULATION REFERENCE BUREAU (Lori Ashford): Population Reference Bureau produces materials and information for the media and policy makers. She said PRB gets demand for simple print materials. People will use what they can get, even if it's not appropriate. She is interested in a hub or partnership model for adaptation of materials.
UK response to presentations:
- Some larger organisations not so near the 'front line' may not listen to local voices.
- NGOs and other organisations at the front line may be more interested in listening to and 'building on local knowledge'.
- The next challenge is to make these local voices heard at national, regional and international levels.
- When trying to attract interest in information, one needs to think carefully about how people learn (eg people remember 20% of what they hear: 40% of what they see and hear and 80% of what they see, hear and do). Most people in rural areas receive information from neighbours, friends and relatives.
- The internet can work to link African communities. CARDNET example-Nigeria and Kenya communities linked through the internet
OVERVIEW OF HIF
- Less formalized, less structured than HIPNET
- Started in 1998 to help bring together interested groups working in the UK
- Has catalysed international activities, including HIF-net at WHO
- Increasing interest in running similar country groups in developing countries: similar groups up and running in Africa
- Synergy with other INASP-Health activities: HIF-net at WHO, INASP-Health Directory, INASP Health Links, INASP-Health advisory service
- A team of 10 volunteers organize the meetings
- Not a fixed membership organization
- Mostly about sharing information and experiences
- Future: potential for increased sustainability and growth, perhaps as part of an international alliance?
WAYS OF WORKING TOGETHER
- HIPNET/HIF can work together to promote culturally sensitive health information
- Brief our senior policy makers on key information and joint actions (e.g. Chief Exec. of the Royal College of Nursing)
- Document work done on information needs assessment and impact evaluation in countries around the world.
- Signpost of the work of regional information centres and cite grey literature (e.g. like Source)
- Feed or link information into one major resource portal (e.g. John Hopkins)? (Johns Hopkins Media Materials Clearinghouse is already a valuable archive of communication materials from around the world).
- Have URL links to major portals such as Reproductive Health Gateway and UN Development Gateway
- Support the Open Access movement (e.g. free journals)
- Apply the Open Access movement to practical healthcare information (e.g. Source and HIF links)
- Learn user-friendly lessons from youth communications (e.g. the use of icons)
- Provide policy makers and health providers with user friendly materials (e.g. one or two page briefs or summaries)
- Don't forget the 'voices' and hidden capacity in the field. Arrange an overseas teleconference to listen to these voices?
DISCUSSION POINTS
- We need to perform more information needs assessments
- See Anthony Costello article on decreases in maternal mortality based on very simple interventions
- What can we (HIF, HIPNET) do to share information about information needs assessments? We can share tools and results. Healthlink Worldwide is already trying to link resource centers.
- Royal College of Nurses - need for influencing people at high levels about the importance of relevant, local information. We need to make sure that everyone knows about this need. Perhaps we should develop some key messages about the value of health information in developing countries.
- Perhaps we could compile a list of what already exists in terms of needs assessments.
- Too many web sites, we need one portal where everything is located
- Open access movement offers some possibilities.
- We should also be collecting the questions that people ask, as well as the answers. This would give additional clues as to what people's information needs are.
- We need to engage developing country voices in this discussion. Next mtg. should be a three-way or four-way videoconference.
- Global Review enthusiasm (see www.inasp.info/health/globalreview ) : build on it to move forward. Could provide an avenue for HIPNet and individual group collaboration. We need to involve groups like AHILA and BIREME.
- It's more about showing what is possible than telling people what to do.
Global Review plans to develop a standard tool for evaluating on-going efforts to assess information needs.
RESOURCES
EXAMPLES OF HIPNET ACTIVITIES
- Shared mailing list of 2,500 libraries in developing countries. HIPNET could share this with HIF or HIF members.
- Work on integration of FP/HIV which includes
- Bibliography of existing publications with links
- Publications
- Packet of materials to be distributed with free rights to reproduce
- CD-ROM / website (INFO)
'HIF-net at WHO' INPUTS
Two e-mails were sent to HIF-net as contributions to the meeting: One from Dr. Pankaj Mehta (UNICEF, India) on the use of relevant information (eg posters) in labour rooms; and one from Professor Anthony Costello (Institute of Child Health, London) drawing attention to a Lancet article (September 11th, 2004) which shows large reductions in deaths of mothers and newborn infants in poor and remote communities in Nepal.
FEEDBACK
At the end of each HIF meeting we ask participants to fill in an evaluation form. This was the FEEDBACK FROM PARTICIPANTS, over half of whom had never been to a HIF meeting before.
1. COMMENTS
Inspirational!
It was the first time that I had the chance to attend such a meeting. It was great. Thanks for giving me the chance to be part of this professional group.
Interesting and fantastic to hear about HIPNET - I wanted to know more about them.
Very interesting teleconference.
I enjoyed it
Very interesting discussions especially the keynote address.
Very useful platform for interaction. Very comforting to see commitment to improving the health of people in developing countries.
Meeting was well organized. It was useful to share experiences and views with HIPNET.
My first attendance! Meeting substance of general interest and I am
beginning to appreciate just some of the global difficulties in accessing health information - especially in the disadvantaged world but of the importance to do so.
My particular interest within Reproductive health (body temperature of infants) was not really covered, especially specifics.
2. HOW USEFUL TO MAKE CONTACTS? AND FOR LEARNING FROM OTHERS?
I am doing my PhD with hard-to-reach young people trying to know what their preferences are in receiving sexual/reproductive health messages. I also was a sex researcher in Iran. I learned very useful points today, which I can use in my discussion in my PhD.
Event for meeting colleague from ID21. Learned about interesting work in N India and reproductive health organizations/networks in the US.
Very useful re learning - particularly learning from experiences of
organizations working from the US.
The video link with US was perfect for alerting us to organizations in other countries and their resources.
Yes, I have picked up so much information to take back to my organization, some things to implement straight away and others to build into long-term projects. It was good to chat to so many people working in this area and to hear what we might do to benefit colleagues in other countries.
Extremely useful in terms of identifying challenges found on the ground with respect to health information provision. Need recognized for looking at info needs from developing country practitioners' point of view.
Good- I have learnt much about HIPNET and HIF - thank you.
3. SUGGESTIONS
Please have more meetings! As was mentioned in the meeting, becoming a more structured group might be helpful as well. It would help members to collaborate with each other outside the meetings too.
Have a shorter teleconference and more time for group discussion with
panellists in London.
Is it possible to do an international videoconference with developing
country information/communication specialists (eg CABI office in Nairobi, Ibrahima Bob in Senegal, BIREME?)
I like the idea of an international HIP-HIFNET meeting and the 3/4 way videoconference.
Very good - can now follow up with HIPNET, HIF and IBP to gather information.
Forum to continue!
Follow-up recommendations.
Meeting reinforces the need for more collaboration and less duplication of effort. The need for linkages and a central hub is a priority, and a goal that can only be reached together.
It has been very useful. Despite already close cooperation with several organizations, new information was acquired and opportunities definitely need to be discussed further.
What, if any, similar research exists in the European Community?
Links with WHO - as part of the vision to expand meetings. Many initiatives within WHO-RHR and WHO in general could link in.
NOTES:
1. HIF and HIPNET will now liaise to take these ideas forward. Please send any comments or suggestions to HIF-net at WHO ([email protected]), Neil Pakenham-Walsh ([email protected]), or Peggy D'Adamo ([email protected]).
2. ACKNOWLEDGEMENTS: Our thanks to all at HIPNET and HIF. Special thanks to Peggy D'Adamo, Vanessa Carroll, Beth Robinson, and the HIF organizing group for help with programme development. To all speakers and contributors. To Indira Benbow for taking notes of meeting. And to Rachel Stancliffe, who voluntarily did the lion's share of the organization and planning of the meeting. Lastly, thanks to BMJ and the Exchange programme for financial support, the Royal College of Physicians for complementary facilities, and Advance Africa for telecommunications support.
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