First Nations & Inuit Health Information System: Are We Ready for Technology? by Heidi J. Kuran "People need to learn that health is in their control." (St. John's) (1)   [ TECHNOLOGY AND FIRST NATIONS COMMUNITIES ] [ POOR COMMUNICATION INFRASTRUCTURE ] [ FEAR OF TECHNOLOGY ] [ INADEQUATE OR LACK OF TIME FOR TECHNOLOGY TRAINING ] [OWNERSHIP AND PRIVACY OF DATA] [ MISTRUST OF AGENCIES AND GOVERNMENT MISUSING HEALTH DATA] [ LACK OF LEADERSHIP FOR IMPLEMENTING FNIHIS ] [ NIHIS IS EXPENSIVE AND ITS BENEFITS UNCLEAR. INTEGRATING FNIHIS INTO CURRENT PROCEDURES IS A COMPLEX PROCESS.]   Healthcare spending rises every year in Canada. The way healthcare is managed will need to change to become modernized, increase effectiveness and lower costs. How can we do this? Using technology for healthcare at the community level may be the answer. Technology will never replace the knowledge and compassion of a caregiver or CHR, but it can improve and extend the delivery of services. It can also offer a cheaper solution over the long run. Healthcare is a complex and labour-intensive business. Every visit to a doctor creates many new pieces of paper. All of this complexity means that doctors, nurses and CHRs often spend as much time filling out paperwork as they do caring for patients. There are now many helpful computer programs for healthcare providers. Technology helps areas to access important health information in isolated. The Internet is also used now to gain knowledge. For example, using technology solutions, local doctors can get in touch with specialists anywhere in the world, day or night, to share their knowledge and have them examine patients from a distance. These techniques will greatly increase a patient’s chances of recovery. Medical record-keeping is one of the more time-consuming and expensive parts of the health care industry. Technology can effectively simplify how we do things. We often use solutions that are paper-based. We write a lot of information down. Using technology in record-keeping means that you can bring a patient’s entire medical history into a computer and save it in a common place called a database. Having information in one place reduces errors and data loss. Now, trusted people such as doctors, nurses and CHRs have easier access to information. Computers have built-in security that keeps patient information private and secure. The doctor-patient relationship is changing. Individuals rely less on their doctor as their only source of health information. There are now more ways to share information among healthcare teams. In the future, technology will bring expert care to even the most remote and isolated parts of the world. Patients will be able to interact with the healthcare providers they need from any location, at any time. Individuals will have greater control over, and access to, their own medical information. (2) TECHNOLOGY AND FIRST NATIONS COMMUNITIES Is technology affecting healthcare in First Nations communities? The answer is yes, thanks in part to the First Nations & Inuit Health Information System. FNIHIS is an easy-to-learn community-based computer system. It provides CHRs and other healthcare professionals with a valuable tool for accessing client health data. The FNIHIS is comprised of 12 systems These systems can collect basic client information such as names, addresses and phone numbers. It can also collect information about immunizations, reportable diseases and chronic diseases. These systems create a set of health facts. These facts will help develop ways to improve health in First Nations communities across Canada. The FNIHIS is also a valuable tool to help track illness and disease trends specific to First Nations and Inuit communities. There are several barriers to using a system like the FNIHIS in communities. They are:  Poor communication infrastructure  Fear of technology among frontline healthcare workers  Inadequate or lack of time for technology training  Ownership and privacy of data issues  Mistrust of government and agencies that can misuse health data  Lack of leadership for implementing the FNIHIS  FNIHIS is expensive and its benefits unclear. Integrating FNIHIS into current healthcare procedures is a complex process POOR COMMUNICATION INFRASTRUCTURE     First Nations communities are spread across Canada and can be rural, urban, isolated, or northern. Within these communities, the access to modern technology differs in each area. Communication infrastructure includes things like telephone access, fibre optics for running Internet technologies and whether or not computers are used daily for work. Remote and isolated communities, especially in the northern regions, have a harder time accessing modern technology. Isolated communities have a hard time because they often do not have the same technology advantages as big cities. Isolated areas may not have the same opportunities to get up to date information. They may not even have access to computers or the Internet. In 1995-96, Health Canada gathered information on health from Canadians in what was called the National Forum on Health – Report on Dialogue with Canadians. Health Canada wanted to learn what problems remote and isolated communities face when trying to access health information. Health Canada got many revealing comments from the people they interviewed. Basically, people want equal access to appropriate healthcare information – the same access as in cities. Some of the comments from the forum were: “Every individual life in isolated communities is worth as much as an individual life in the south.” (Iqaluit) “The hospital [in Iqaluit] has help for French-speaking people but we don’t have the same level of service for us in Inuktituk. At least information on vitamins and prescriptions should be in your own language. There is an information centre in Nunavut for medical information including traditional measures and information on side effects.” (Iqaluit) (3) In addition, in May of 1998, the Government of Canada conducted what was called a Rural Dialogue Session in Hay River, Northwest Territories. They brought in two groups: one group from Nunavut and the other from the Northwest Territories. The groups discussed community challenges in their northern and isolated communities. One of the biggest issues common to these two groups was lack of access to information and to the technology needed to feel on a par with the cities. There is often a general feeling that the government does not address the needs of the northern, rural and isolated communities. Isolated communities feel that the government needs to learn about the north. There is a need for rural, remote and isolated communities to be recognized in Ottawa. Ottawa must remain interested in the health information issues present in remote communities. (4) The groups were asked the following question: What are the biggest challenges that you, your family and your community face as you look to the future? The group from the Northwest Territories cited as a challenge poor access to technology and a very slow introduction of Internet in remote or isolated communities. They also felt that getting onto the Internet and finding anything of value takes too long. This prevents people from getting involved in addressing issues to help their leaders. The group from Nunavut said that their access to the Internet was unreliable. Overall, community goals are to drastically increase communication access in isolated areas. (5) To address the needs of rural and isolated communities, Industry < Canada is working on improving access to the Internet. The Community Access Program (CAP) helps to provide rural, remote and urban communities with affordable Internet access. The program also provides new ways to communicate and learn new things in today’s technology-based economy. The CAP is currently working to hook up 5,000 of Canada’s rural and remote communities to the nternet. There are so many communities where basic physical access to single phone lines is still a barrier. These communities face issues of reliable Internet connections and the high cost of providing communication equipment because they are not near a bigger town or city | where it might be cheaper. By working with provincial and territorial governments, educators, libraries, schools and the private sector, the CAP program aims to create up to 10,000 public Internet access sites in Canada by March 31, 2001. (6) There are many reasons why Industry Canada considers that technology access in rural areas should be improved:  Helping rural businesses obtain access to information, clients and markets.  Providing rural residents with ready access to programs and services.  Helping provide education, training opportunities and skills upgrading.  Providing new applications in areas such as rural health care. Access to information and Internet service is a necessary requirement for residents to effectively participate and contribute within our society. It is very important for First Nations people to have access to their own health information. (7) According to the Office of Health and the Information Highway - Health Canada, “it is paramount that there be universal, affordable, equitable access throughout Canadian society to the Canada Health Infoway." To this end, the federal government should continue to ensure universal, equitable and affordable access to basic telecommunications infrastructure, now and in the future. Health Canada should also take a leadership role in ensuring that health information and healthcare applications for the public are developed to be accessible to all citizens, irrespective of their geographic location, income, language, disability, gender, age, cultural background, or level of traditional or digital literacy.” (8) FEAR OF TECHNOLOGY     “Traditional people of Indian nations have interpreted the two roads that face the light-skinned race as the road to technology and the road to spirituality. We feel that the road to technology ... has led modern society to a damaged and seared earth. Could it be that the road to technology represents a rush to destruction, and that the road to spirituality represents the slower path that the traditional native people have travelled and are now seeking again? The Earth is not scorched on this trail. The grass is still growing there.” (Commanda 1991). (9) “Aboriginal health care workers’ unfamiliarity with and fear of technology is an effective barrier that impedes them from attaining basic computer skills that would enhance understanding and comfort levels with this technology.” (Assembly of First Nations, November 1998). (10) Many First Nations communities do have access to computers or the Internet. A barrier to effectively using some older computers comes from a general fear of technology. Many CHRs do not use computers daily and CHRs have never used a computer in their lives. Sometimes, people who fear computers also fear showing others that they do not know how to use them. A lot of people older than 50 are not comfortable with computers and exhibit a fear of making mistakes. However, it is a common myth that only the elderly are affected by fear of technology. The truth is that "technophobia” – or fear of technology - is not influenced by age; usually, “technophobia” is related to a person’s life experience and how he or she was introduced to computers in the first place. (11) Users - and not just older and new users - are right to be mistrustful of technology. Many software products are frightening to new users. Usually, computer systems have messages and errors that are hard to understand. Messages such as “fatal error” or “illegal operation” are scary, especially for older users for whom such terms as “fatal” or “illegal” may have a worrying association. As we move further into a hi-tech direction, attitudes and fears are changing. Right now, there is still much nervousness when it comes to using the computer or Internet. (12) If people are afraid to use computers, can we expect them to accept a complicated and sensitive data system such as the FNIHIS? This is a challenge that must be dealt with for the FNIHIS to be successfully put in place at the community level. The benefit of the FNIHIS is that it is very user-friendly with protection in place to recover from mistakes. It is designed to be easy to use. All a person needs is adequate training to be able to use the system effectively. Many “fear of technology” issues about the FNIHIS or other computer systems can be solved with funding for training and education about technology. Users also need to feel they have support and somewhere to turn if they make a mistake. INADEQUATE OR LACK OF TIME FOR TECHNOLOGY TRAINING “It is the Aboriginal take on catch-22. Aboriginal healthcare workers do not have the training resources or the time, in the face of heavy workloads, to access the training that will enable more efficient use of time in the workplace. Their unfamiliarity with and fear of new information technology is an effective barrier that impedes them from attaining basic computer skills that would enhance understanding and comfort levels with this technology.”(13) Rural and isolated communities must be able to take part in national and world health decisions. One way of making sure that happens is through access to modern information and computers. Computers will also help overcome distance barriers because they can send e-mail and access the Internet. However, people need training in order to use new technology properly. To be useful to a lot of people, modern technology such as the FNIHIS must help different people in different health roles. Rural and more isolated groups of people in Nunavut and Northwest Territories say that it is very difficult to find information on the Internet. This is because the amount of information available keeps getting larger. Technology training is very important to using the huge possibilities of the Internet. (14) OWNERSHIP AND PRIVACY OF DATA Aboriginal communities have a historical and legal right to self-government. In the case of the FNIHIS, this would mean ownership of the data contained in it. The AFN believes that control over and health data is essential for Aboriginal communities. (16) The FNIHIS has many benefits to communities. One benefit is having all of the community data stored in one place. For First Nations people there are many concerns about the privacy and security of their data. Privacy is the right of individuals to decide when and how much information they want to share about themselves and others. Aboriginal Canadians are concerned about loss of privacy. They have concerns about their information being available inside computers. Some of the privacy issues relating to FNIHIS are as follows:  What information should be included in the FNIHIS?  Who should have access to data in the FNIHIS? Under what circumstances should the FNIHIS data be shared with other healthcare providers? How will a patient be able to access his or her own information in the FNIHIS?  In what way can the information in the FNIHIS be used for secondary purposes (e.g. research, administration)? When is the patient's consent required? Health Canada believes that protecting health information from bad usage is very important: “Health data must be created, used, transmitted, aggregated, and abstracted in ways and in environments that maintain data security and accuracy, prevent inadvertent or accidental release, prevent or deter access by unauthorized users, and discourage, detect, and punish inappropriate use of health data by unauthorized users.” (17). Most provinces and territories are attempting to address health information privacy issues. A few provinces have introduced health privacy laws. The federal government has recently adopted the Personal Information Protection and Electronic Documents Act (formerly known as Bill C-6). This Act will impact the privacy of Canadians in the next few years. The Act applies to the collection, use and disclosure of personal information by organizations during commercial activities. Personal information is any information about an identifiable individual whether recorded or not. Organizations include associations, partnerships, persons and trade unions. “Bricks-and-mortar” and e-commerce businesses are covered by the Act. The term “commercial activity” includes the selling, bartering or leasing of donor, membership or other fund-raising lists. (18) But the Privacy Act will not affect health data for another year, as it will only on January 1, 2002 be included under the Privacy Act. It is still unclear what organizations will be affected when it does. Many health organizations will argue that their use of health data does not make them any money. They feel that because the health data is not bought or sold, it should not fall under the Act. Critics of the Privacy Act feel it is too weak and will not stop clever organizations from finding ways around it. These organizations will say that the data they collect and share cannot identify individuals. People who specialize in privacy issues do not believe claims that health data will be kept private and nameless. Health information is valuable because it can be linked to certain groups or individuals. If you truly make collection of data anonymous, its value is dramatically decreased (19). These issues are rucial to as there are many examples of the misuse of health data collected from aboriginal people across the country. To successfully implement the FNIHIS, the Ownership, Control, Access and Possession (OCAP) of First Nations health data must be appropriately addressed. According to Larry Sault, Grand Chief, Association of Iroquois and Allied Indians, the FNIHIS will not evolve to its fullest potential unless the issue of OCAP is resolved with First Nations (20). MISTRUST OF AGENCIES AND GOVERNMENT MISUSING HEALTH DATA “Research on Aboriginal health problems and their interpretation by external agencies such as universities, government departments and the media have caused growing concern during the past few decades. For this reason, any attempt to develop health information systems without the full participation of Aboriginal communities will fail.” (24). What follows is a story about the Nuu-chah-nulth of Vancouver Island, but the exploitation of health data happens all too often to Aboriginal people in Canada: Genetic researcher uses Nuu-chah-nulth blood for unapproved studies in Genetic Anthropology. “When it comes to First Nations, they have no codes of conduct. They don’t respect us. They take advantage of us,” said Cosmos. “It bothers me when our people are used like this. He didn’t tell us the whole story. We didn’t authorize him to use the blood for anything other than try to find a cure for arthritis, and if he’s not using it for the purposes he took our blood for, it should be either destroyed or returned to us.” “He just used us. That’s how I feel now,” said Arlene Paul. “His research could have helped our people to live longer, happier lives, and for him to hold that information and not tell us anything is just really, really wrong.” [The genetic researcher, Richard Ward,] argues that what he did was neither wrong nor unethical, as he claims his anthropological work connects with rheumatic research in that it all comes back to those tiny strands of DNA. Whether you’re looking for genetic markers showing a predisposition towards rheumatic diseases, or a gene tracing the history of a people, Ward says the many things revealed through genetic research are all related and inextricable. Back at U.B.C, Ward’s former supervisor Rick Spratley is unhappy with what has happened to the Nuu-chah-nulth blood, saying what has transpired is problematic for both him and his department, adding, “I would be happy to have a dialogue with the Nuu-chah-nulth”. “What’s so damaging about a study like this is that it erodes the trust between communities and researchers. Without that trust we’re not going to be able to do a whole lot of important work. That trust is too important to be harmed by any particular researcher, and clearly we need to rectify that.” (25) Trust is a key factor related to health care decision-making. Some Aboriginal people express doubt and mistrust about every part of the health care system. There is a strong sense that the health-related decisions affecting Aboriginal Canadians are not influenced by Aboriginal people. Politicians often make health decisions. Lacking in population numbers, Aboriginal communities feel largely ignored. Sometimes, Aboriginal people are given health programs that are not appropriate to their needs. According to the National Forum on Health: Report on Dialogue with Canadians, participants felt that health needs should be determined at home, by the community: “[We] must do what the community wants; community knows what its priorities are.” (Regina) “[We] need the services to be decentralized and totally determined by the community.” (Quatsino/Coal Harbour) (26) The FNIHIS must be operated and controlled at the community level. Aboriginal people need to feel confident that their sensitive health data is not exploited. They want to feel that their unique community needs are being met. Without that assurance, the FNIHIS may not be used to its full potential. LACK OF LEADERSHIP FOR IMPLEMENTING FNIHIS Strong leadership will be necessary for the FNIHIS to reach communities across Canada. That leadership will involve funding. First Nations’ community leaders need to learn about the FNIHIS and what it can do for their community. Many leaders in Aboriginal communities remain doubtful about computer technology in general. Community leaders are the key to successfully implement the FNIHIS. The community members look to their leaders for guidance when it comes to decisions impacting their health and wellness. If leaders accept the FNIHIS, community members are more likely to see how it can improve their lives. Activities have begun to help communities start using the FNIHIS. For communities that have the system, Health Canada has provided funding to employ a data-entry clerk. The clerk will enter community health data into the system. Leadership must establish a shared vision and a shared commitment to the FNIHIS for it to succeed. When control of the FNIHIS passes from Health Canada, to First Nations, strong community commitment will make it a much easier process. Some people have doubts about the FNIHIS. Most of the concerns regard the ownership and privacy of health data and the level of involvement from Health Canada. First Nations communities want their own data to be controlled by their own people. Currently, a process is underway to transfer the FNIHIS to First Nations. At this time, Health Canada still has overall authority over the system. For the transition process to be successful, First Nations communities need to learn all about the system. As community ability increases, the system can move away from Health Canada and into First Nations’ control. In January 2000, the transfer process to First Nations control began with the presentation of a Transitional Plan to the FNIHIS National Steering Committee and its vision is: “First Nations will assume increased authority, control and responsibility over research and data gathering systems to support First Nations self government and to build a distinct, autonomous information structure that will be strategically interconnected to the Canada Health Infoway.” The transfer process has received approval from the Assembly of First Nations Chiefs Committee on Health and the FNIHIS Executive Committee. A Working Group has been created to oversee the entire transfer process. In January 2001, the Transfer Process was presented to the National Steering Committee. FNIHIS IS EXPENSIVE AND ITS BENEFITS UNCLEAR. INTEGRATING FNIHIS INTO CURRENT PROCEDURES IS A COMPLEX PROCESS. The implemenation of the FNIHIS will require cooperation. Government and community leaders in First Nations must work together to implement the system. The need for cooperation leaves many discouraged because they think that it will be far too difficult to get the two groups to agree. The costs of setting up and maintaining the FNIHIS are high and some community leaders do not see the benefits of a system with such a high price tag. Some thoughts about the FNIHIS:  Why switch what we are doing on paper for such an expensive computerized system?  Why spend the time and build the resources when we still do not own the FNIHIS or its data?  Why should we trust that our health data would not be misused as it has so often before?  How do we maintain the human resources we need to run such a system in our communities? The complications of the system will be addressed more completely when the transition of the FNIHIS to First Nations communities has been completed. There remain weaknesses and barriers with a technology system such as the FNIHIS. As a first step, communities need access to computers and technology. Communities require readily available and reliable access to the Internet. The success of the FNIHIS depends on the availability and use of technology. Some of the more isolated and rural communities struggle with basic telephone line access. This can make connecting to the Internet extremely expensive. Computer use on the job needs to increase, but more training will allow CHRs to feel comfortable using the FNIHIS. When health workers and CHRs use a new technology containing sensitive health data, they may fear making mistakes. Many CHRs have rarely, if ever, used computers in their careers. They need to be given time for training in their work schedule to gain valuable experience with current technology systems. The ownership and privacy of health data remains an issue for First Nations people. There have been many documented cases of the misuse of First Nations health information. Issues of Ownership, Control Access and Possession (OCAP) with health data will remain until the FNIHIS transition process is complete.