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Understanding Community Needs -FNIHIS Focus Groups
by Heidi J. Kuran The National Indian and Inuit Community Health Representatives
Organization (NIICHRO) conducted four focus groups across Canada
throughout February and March 2001. The First Nations and Inuit
Health Information System (FNIHIS) focus groups were held in
Vancouver, Regina, Nippissing and Halifax. The focus groups gathered
between 8 to 12 CHRs from communities near the four areas selected.
The sites selected represented an Eastern, Western, Central and
Northern perspective. With all the participants from different
places, each person had interesting comments about the FNIHIS. The FNIHIS focus groups were designed to see how CHRs would use a community-based technology system. There were two reasons for doing the focus groups. First, to determine if the FNIHIS is currently used by CHRs, and second, to identify what barriers may exist if the system is not being used. The focus groups were not intended as problem- solving or decision-making sessions. They were designed to allow NIICHRO to encourage group discussion. The four groups were valuable to gain firsthand insight into the CHRs' attitude and understanding about the FNIHIS. WHAT IS THE FNIHIS? The First Nations and Inuit Health Information System (FNIHIS)
is a community-based computer system that gathers First Nations
health data. It is designed as a computer program that is easy
to learn. It will provide CHRs and other healthcare professionals
with a valuable tool for accessing client health data. It also
has an online component so that health data can be accessed though
connections to an Internet website. The site is made secure by
something called a firewall. The FNIHIS contains 12 systems called subsystems. These subsystems
can collect health information such as basic client information
like names, addresses and phone numbers. It can also collect
information about immunizations, reportable diseases and chronic
diseases. The subsystems create a set of health facts. These
facts will help develop ways to improve health in First Nations
communities across Canada. It is also a valuable tool to help
track illness and disease trends specific to First Nations and
Inuit communities. The FNIHIS was developed in 1988. Until then, there was no way to pool health data in one place. The Ontario Region’s health data was studied and it showed that the way health data was collected was not uniform across the province. It was decided that a Health Information System (HIS) computer program should be developed. The system would create a common way to collect health data was amongst First Nations people living on reserve. Medical Services Branch then created a partnership with First Nations living on reserve and developed the FNIHIS for First Nations communities across Canada. The system saves CHRs and nurses a lot of time because health files are all in one place. The FNIHIS can keep computerized records on such things as client core information, tests and exams, immunization, medication, reportable diseases, medical allergies, environmental health, public health information, and psychosocial and substance abuse. The immunization subsystem is the most widely used section in the FNIHIS. The information contained in the FNIHIS is a valuable resource
for setting health policies. The data can help communities develop
health plans that will suit them. Personal data on the system
remains strictly protected and only those people who have an
appropriate password can access certain medical records.
The Health Information System was
According to the First Nations and Inuit Health Programs'
1999-2000 “In 1999-2000, the First Nations and Inuit Health Programs (FNIHP) Directorate continued to distribute the FNIHIS to First Nations and Inuit communities across the country, and to maintain the existing info- and infrastructures. As of May 30, 2000, the FNIHIS was available in 271 health facilities serving over 330 First Nations and Inuit communities. Distribution of the FNIHIS should be completed in 2000/2001. 2000-2001 Main Activities and Anticipated Outcomes:
Each focus group began with an opening session outlining the purpose of the FNIHIS focus group project. Immediately after, a local representative from Health Canada's First Nations and Inuit Health Programs (FNIHP) demonstrated the FNIHIS and explained Health Canada’s role in the FNIHIS, what its plans are for implementation of the system, and outlined the benefits of the FNIHIS to First Nations Communities. Because each FNIHP presenter was different for each focus group, uniformity among the groups could not be guaranteed as each representative may have highlighted slightly different aspects of the FNIHIS. However, the four focus groups were asked the exact same questions in the same order after the demonstration. The focus groups involved systematic individual commentary by each member present. The compilation of ideas was recorded on tape and also typed up by a recorder present at each session. The focus group allowed for ideas, concerns, issues and recommendations to be explained fully and clearly. The ideas and topics presented were surprisingly similar and consistent throughout all four focus group conferences. In assessing the needs identified by all participants, there was a great deal of common ground throughout the different areas of Canada. The four focus groups were asked the following questions: I. General - CHRs’ Role with Health Data in the
Community II. Technology Use in the Community / Does your community use modern information technology (computers, the Internet, database collection systems)? Does your community have any/adequate access to modern technology
Was this the first time you have seen how the system works?
Do your community leaders and healthcare workers support the
use III. Training for Technology and the FNIHIS Would your current workload allow you the time to take such courses? How should training be conducted for the FNIHIS system? IV. Confidentiality of First Nations Health Data Do you think that the privacy of First Nations health data
has been Is any health data too sensitive to store in the FNIHIS? V. FNIHIS Role in First Nations Health How could the FNIHIS be improved?
FOCUS GROUP OBSERVATIONS The focus groups covered four distinct regions of Canada Vancouver, British Columbia At the Vancouver focus group, most of the participants had some exposure to the FNIHIS and were eager to see the demonstration to understand how the system could be used in their communities. One of the focus group participants was a data entry clerk who will be entering data for as many as 18 bands. After the introductory information provided by the facilitators,
the participants were interested in the system based on what
they understood about it. The demonstration of the FNIHIS was
tailored to the ways in which CHRs could use the data collected
in the system. This was vital to the participants learning more
about the FNIHIS. After the demonstration, the focus group could
see many ways in which the FNIHIS could benefit their healthcare
processes. They particularly liked the immunization and public
health subsystems that would be extremely valuable to CHRs. One
CHR in the group gathers data on diabetics in her community and
felt that the chronic disease subsystem would be extremely valuable
in her community. Most participants agreed that in order to use the FNIHIS effectively, they would require training. The participants said that leaders in their communities held training as a high priority but finding the time in their busy schedules was an issue. Most mentioned that they required better access to computers and the Internet so that they could practice what they learn. Regina, Saskatchewan Many participants in the Regina focus group had little exposure to the FNIHIS. However, the group was very interested and willing to learn about the system. During the introduction the facilitators discovered that there were two participants in the group were actually working directly with the system and entering data. There was a definite sense that this was an overwhelming task in addition to their other duties. A data entry clerk was a valuable resource to those who mentioned entering data themselves. The two who were entering data did not have all data in the system so they did not feel that it was producing effective results for their communities yet. They predicted that when all data will be present, they will use the system to generate reports to help them better plan health initiatives in their communities. After the demonstration of the FNIHIS, the participants had many questions about data privacy and security. The members of this group were very concerned about who would have access to data and how that data would be used. An explanation of the security model in place helped the group understand the protection that the FNIHIS has built into the system. The Regina focus group seemed willing to accept the system as long as there were stringent data confidentiality measures in place. The biggest issue at this focus group was whether or not the data would be used outside the community and at the regional and national levels. It was explained to the group that all data used would be for each particular community with complete authority at the community level. Again, barriers to using technology and the FNIHIS were lack
of training and lack of ready access to computers. All participants
saw the value of using computers in their daily tasks, but most
did not have computers at work. In one case, there is only one
computer for an entire office and many have to share it. Nippissing, Ontario The Nippissing focus group was alive with enthusiasm about the FNIHIS. After the demonstration, the participants saw the potential timesaving aspects of the FNIHIS that would help them immensely in their daily tasks. Several interesting ideas came up during this focus group. One unique perspective was that knowledge should be shared among users to create a help network. In Ontario, the Health Canada representative for FNIHIS advocates users helping users and often puts new users in touch with those who are more experienced. Those actually entering the data have an intimate knowledge of the system and can share their knowledge and act as teachers for those new to the system. Once again, poor access to technology was mentioned as a barrier to using the FNIHIS. Participants mentioned having one computer for an entire clinic. They also talked about needing training not only in technology but also in medical terminology so that they can understand the meaning of the data they enter into the system. Participants indicated that the communities which show the most interest in the system have leaders who advocate its use and have helped convince their people of its value. Halifax, Nova Scotia The participants at the Halifax focus group had little or no experience with the FNIHIS. One person had seen the system years earlier but not since. Like Regina, this group was concerned about privacy issues and data ownership. One person in the group expressed distrust about having her own data in the system. She mentioned that she would not want to be included in the system herself and risk having another CHR or colleague access her health history. Most participants felt that they did not have enough training
to feel confident with technology – especially entering
confidential health data. Participants mentioned that training
programs were hard to attend due to workload. CONCLUSION The focus groups’ comments indicate that access to computers
and Effective FNIHIS training is important for CHRs to feel comfortable using the system. The focus groups all mentioned training as a barrier to using computer technology. CHRs want to be trained for technology but many experienced CHRs are older and have had little or no exposure to computers or the Internet. The focus group responses support the need for additional technology training among CHRs and other health professionals. To contribute to technology education in First Nations and Inuit communities, training must focus on building skills in technology. It must also address the need to understand data privacy issues. The FNIHIS is in the process of transition from government to First Nations' community control. In the next several years, the barriers to using the FNIHIS will not be about technology but more about ownership, control and access to data. First Nations and Inuit need community-based health management skills and training to manage their own health data requirements. No data exists that finds one style of training more effective than another so First Nations have an excellent opportunity to determine how they would like to learn. Information gathered from the focus groups indicates that
although the FNIHIS handles many health data collection needs,
many more can be |
