Course Name: HAD 5011: Canada’s Health Care System and Health Policy I
Semester: Fall 2005
Tutor: Raisa B. Deber
Department of Health Policy, Management and Evaluation
5460 Yonge street, #212
North York, Ontario M2N 6K7
Title: Making the data follow the patient: towards an integrated Electronic Health Record in Ontario
Both Romanow and Kirby have stated that Canadians should have their full health record accessible on-line, as necessary—as an Electronic Health Record (EHR). Although computerized health records remain rare, implementation of the EHR has recently begun in Ontario. Health care interest groups are very interested and involved in this initiative. In this paper, I will review and analyse data available from the major health care Information Technology agencies, from health care research institutions such as RAND, as well as from the government, on the current status and development of the Ontario Electronic Health Record.
The best-organized interest groups (physicians, hospitals) have had an early start on computerization. Some physicians are receiving subsidies from the government in order to implement practice-based systems. Private providers, such as laboratories and pharmacies, have already computerized to improve business efficiency. Interoperability is likely to occur first amongst these early adopters. Home care agencies, because of their weaker role within Medicare, have had less success in obtaining funding for clinical systems. Governments have had role in funding IT initiatives, and determining interoperability standards through agencies such as Health Infoway. Patient access may become a possibility, although organized disease groups may be the first beneficiaries.
In conclusion, physicians and hospitals are likely to continue as the key providers of health care, as they will be the main contributors to the electronic databases, and will retain control over the data. As the EHR assumes increasing importance, health care interest groups will increasingly lobby for funds, for access, and for input.
In our current health system, data does not easily follow patients. Health records are paper-based; information is forwarded by mail or by fax. If computerized records do exist, they do not interlink. The result is information silos, resulting in waste due to duplication of tests, and an increased risk of medical errors due to missing or incorrect information1-3.
The Kirby and Romanow reports have both recommended as policy a system of personal Electronic Health Records (EHRs) for all Canadians1, 2. The First Ministers committed to accelerating the implementation of EHRs, as part of the 10 year plan4. EHRs consist of linked databases with information about a person’s encounters with the health care system. An authorized provider can access relevant aspects of a patient’s EHR as needed, and patients may be able to view their own records on-line1.
Potentially, this will result in cost savings due to increased efficiency and decreased duplication, as well as reduced medical errors because of better data availability5. Integrated electronic records in the US Veterans’ Administration system have resulted in improved quality of care6. Patients may become more involved in their own care if they have access to their information. Electronic data will make more population-based research projects possible; this has already occurred in the U.K.7, 8.
While the idea of easily accessible health data based on the Electronic Health Record is appealing, implementation is proving to be slow and difficult. In this paper, I will analyse the current status, and progress made towards the EHR in Ontario. One of the key factors is the influence of health care interest groups, and this paper will concentrate on them.
For this paper, I will analyse information available on EHRs from the Ontario ministry of Health, as well as from provincial and federal agencies responsible for integrating electronic health data. As well, I will use major findings from the RAND Corporation on health information technology, and findings from recent biomedical literature on the subject. I will identify the major interest groups involved in electronic health data ownership and portability. I will describe the current status of electronic interoperability, and analyse the factors bearing on the near future of this initiative, with respect to the likely actions of different interest groups.
Who keeps a patient’s data?
Each patient generates data every time they have an encounter in the health system. Since they are institutionalized as the providers of health care under Medicare, physicians and hospitals hold most of a patient’s medical data. Other providers (such as pharmacists, physiotherapists, psychologists, optometrists, and alternative medicine practitioners) keep some data, as do community-based agencies (home care, outpatient laboratories, some social agencies). All operate largely independently of each other9. Provincial governments have data on outpatient physician billing and diagnostic codes, as well as information on prescriptions paid for through provincial drug plans; researchers can access this data in an anonymized form, and can link patient level information in different databases. The complexity of the health care system, the fact that no single institution (including government) or interest group has overall power or responsibility for managing the system, as well as the lack of trust between and within different provider groups and institutions make sharing data a daunting task.
Who should connect?
The value of electronic records increases with the number of people and organizations that contribute to the data10. While the number of people and institutions who could input data into an EHR is potentially large, an expert panel recently identified the key providers. These are: “physician offices, hospitals, skilled nursing facilities, home health agencies, clinical laboratories, payers, and pharmacies.”11
As the value of the EHR increases, other interest groups (for example, CAM providers) may seek to have access or input. Ability to have input into the EHR will likely further institutionalize those who provide “recognized” (and thus more likely to be publicly funded) health care.
For this paper, I will concentrate on the initial interest groups named above, and their interactions.
The software vendors
Many private vendors sell practice software to enter clinical data9; this has led to a profusion of different systems. Similarly, hospitals have bought systems from different vendors. Interoperability has not been a requirement for any system in the past.
The providers of software are thus private, for-profit, small to large companies. Up to now, there has been little government input into the details of clinical data entry; companies have only had to comply with electronic billing requirements. Because of the movement towards standardization and interoperability, government interest has recently increased12.
The Ontario government is now subsidizing software from certified companies for some primary care practices. It has hired a company (G.E.) to host health care information in a large, managed, data warehouse; with this approach, providers access patient information over broadband, and do not have data in their own practices. Having a single, large, central data repository may make interoperability easier to manage. However, the certification process meant that 12 other private companies met government criteria13; they do not benefit from the additional government subsidy offered to G.E. These clinical management software companies are using their association to lobby for equal treatment (http://www.itacontario.com/about/com-cms.htm). The vendors would prefer to have control over interoperability standards.
The cost of interoperability
According to Fooks and Lewis, spending on Health Information Technology in Canada was 2% of health care budgets in 2002, compared to 5% to 8% in the US14. The U.K. has invested $8 billion in IT infrastructure11. A recent report on building an interoperable system for the US estimated that the total cost over 5 years would be $156 billion in capital cost, with $48 billion in annual operating costs. One third of this is for interoperability11. Canadian costs are about a tenth of the US costs, which would lead to an estimated $5.2 billion capital cost for interoperability in Canada. Kirby estimates the costs of a pan-Canadian coordinated system to be $2.2 billion, and $3.8 billion if implementation is uncoordinated1. Clearly, cost estimates for interoperability vary. Funding for Canada Health Infoway, charged in 2000 with “making clinical data available across the continuum of care and across health delivery organizations and regions”15, is $1.1 billion16; that is likely to be inadequate, even by the most conservative estimates.
One report estimates cost savings in the US due to increased efficiency to be $77 billion per year 5.
Groups implementing EHRs and their funding
A significant problem with EHRs is that providers pay for the electronic records in their practices, but most of the benefits accrue to patients and to the system5, 9. This is leading to slow adoption at the practice level: as one physician said, “None of the many beneficiaries of our investment—patients, insurance companies, our specialist colleagues, health plans, our liability carrier—have directly shared in the cost of implementing an electronic health record system.”17 A recent RAND report estimated that EHR adoption in physicians’ practices is at 12% in the US10.
The Ontario Government has agreed to subsidize office systems for primary care physicians, although only for those participating in primary care reform projects18. The government has transferred $150 million to OntarioMD, a company owned by the Ontario Medical Association (www.ontariomd.com)19. Physicians have access to secure internet connectivity through the government funded Smart Systems for Health Agency’s network19.
The physicians’ association, as a “top of the food chain” interest group20, was thus able to negotiate funding and to obtain a large degree of control over practice-based Information Technology implementation. The longitudinal record found in family practices, to which other members of the health care system routinely contribute, stands a good chance of becoming the nucleus of the EHR. This may continue the institutionalization of physicians as key providers of health care.
Community physicians who have computerized are well aware of the lack of interoperability: “Unfortunately, most of the information we receive (such as radiology reports, consultations, and procedure reports) does not come to us in a format that the system can recognize electronically”17. As more physicians computerize because of the new level of support, there will be pressure on other members of the health care system to connect to their practice-based software.
Hospitals and nursing homes
The current rate of Electronic record adoption in hospitals is between 20 and 30% in the US21; information is not available for Canada22. Hospitals in Canada are run as independent non-profit corporations, funded by provincial governments. As a result, hospitals have been free to choose individual electronic systems. Because of their size, and the fact that they receive global funding, hospitals have begun to computerize in order to achieve efficiencies. Savings come from reduced hospital stays due to better scheduling and coordination, reduced administrative time for nurses (currently, nurses spend 30% of their time managing paper records2), and better drug utilization5. Hospitals have concentrated on these internal efficiency processes, rather than external communication. This has led to a lack of ability to exchange electronic information between hospitals, and a lack of connectivity with community providers’ systems.
However, hospitals recognize that improved data flow with external organizations can lead to cost savings due to more rapid, more coordinated patient discharges. For example, an initiative to connect electronically the University Health Network hospitals, Bridgepoint Rehabilitation hospital, and the Toronto and North York CCACs has recently started (personal communication, Dr. Philip Ellison).
Electronic records are rare in Nursing homes; an estimated 1% of U.S. skilled nursing facilities currently have them11. A recent RAND report found that for-profit facilities adopt Information Technology at a much lower rate than not for profit facilities21; about 50% of nursing homes are for-profit23. A business case for EHRs is difficult to make in a for-profit nursing home environment, as it was difficult to make in for-profit physician practices prior to government subsidies. It will be necessary to provide incentives to computerize for nursing homes. However, this sector may not have the interest or organizational reach to lobby effectively for incentives.
Like hospitals, Home Care agencies have many different IT systems; these do not link with each other, or with hospital or community physicians’ systems24. There is currently no overall IT strategy, and no consistent data collection on process or outcomes; as a result, quality is difficult to measure, and research is almost impossible24. CCACs currently have access to secure email via the provincial Smart Systems for health agency, and there are plans to link some agencies to hospitals to speed up referrals25.
Medicare does not fund Home Care, unlike hospitals and physicians. There is no strong interest group, such as the Ontario Medical Association, to advocate for additional funding for Information Technology, although the Ontario Association of Community Care Access Centres provides some advocacy. Home care agencies, unlike hospitals, are community-based, and so do not have large, in-house IT departments.
CCAC personnel often act as coordinators, ensuring that community services are in place upon hospital discharge, and linking with primary care to prevent deterioration of patients and admission to acute care. They are ideally placed to benefit from access to an EHR, but will require much stronger advocacy for IT funding.
Community-based laboratories are already computerized. A provincial initiative to standardize nomenclature, and to exchange laboratory data electronically is currently underway26. The three largest community laboratories in Ontario supply information electronically to all certified primary care Electronic Records18. Because electronic data is much easier to process, it is likely that some computerized primary care providers will direct patients away from non-affiliated laboratories, thus eventually providing incentives for most laboratories to connect. There are already some large-scale provincial initiatives in existence, such as the computerized pap smear database (http://www.inscyte.org/cytobase/cytobase.html).
Laboratories are likely to be one of the first components to be integrated; a good business case can be made for computerization, as it will reduce the number of lab errors, the number of deliveries of reports to physicians’ offices, and physician call backs because of missing information, thus improving efficiency. As well, there are a limited number of large private laboratories, and limited amount of clinical data compared to other health care areas. Laboratory data lends itself fairly readily to standardization, as it often involves quantitative information.
Hospital-based laboratories use proprietary hospital IT systems. They are thus less likely to connect to outside providers or institutions, as they will depend on their institutions’ connectivity efforts.
Pharmacies already have drug interaction and electronic medication lists in place. The Ontario government pays for drugs for the elderly and people on social assistance; pharmacists transmit information regarding those drugs to the government to ensure reimbursement. Starting September 2005, Emergency departments will have access to the provincial drug benefit database27. Community physicians, however, will not be given access.
Institutions do not yet trust electronic communication: the Ontario College of Pharmacists and College of Physicians and Surgeons of Ontario will not allow the electronic transmission of prescriptions from physicians to pharmacists28.
Because of the more limited amount of data in pharmacy, integrating pharmacy-based drug information with the EHR will likely represent less of a challenge than for other health care areas.
Pharmacists can potentially expand their scope of practice with wider access to patient records. They can already charge for some counselling (for example, for the emergency contraceptive). Pharmacy interest groups may use access to the EHR to ask for further funding based on increased participation in patient care.
Local Integration Health Networks
Ontario now has 14 LHINs, whose function is to integrate health services. The LHINs have recently reported on their priorities29, and several reports mention integration of electronic data from hospitals, community-based physicians, and community agencies as a priority to ensure seamless care. The reports do not say how they will implement or pay for IT integration. It is too early to see what role LHINs will play.
Governments play a critical role in ensuring data standards and interoperability.
Several federal and provincial initiatives have started:
Governments also have an important role in ensuring connectivity. The Ministry of Health of Ontario established SSHA (the Smart Systems for Health Agency, www.ssha.on.ca) to connect hospitals and providers. It provides secure broadband access to hospitals, physicians, and community health agencies.
Funding for Electronic Health Records is a significant problem, since, as previously discussed, the system, rather than the provider, benefits. Governments can help by subsidizing areas that benefit less immediately from computerization or that do not have the resources to computerize (physicians’ offices, nursing homes, Home Care). Since they pay for about 70% of health care costs31, governments will ultimately benefit from improved efficiency in the health care system. Although interest groups will advocate for funding for their own members, a recent editorial stated: “it is an absolute requirement that funding for the adoption of this technology be provided simultaneously to hospitals, clinics, pharmacists and the offices of practising physicians. This is a federal role that will need considerably more investment than has been forthcoming”9. The federal and provincial governments should consider allocating funding to several groups at once, contingent upon connectivity. As well, the government could disproportionately fund activities that are dependant on computerization. For example, reporting and quality initiatives are much easier to manage with Information Technology. Family physicians are now rewarded for meeting practice targets for five preventive services; this is difficult to measure, let alone achieve, without IT.
Interlinked EHRs may provide a good opportunity for governments to manage health care based on better data. This may shift policy towards rewards for quality, rather than service, as is currently happening in the U.K.32 Governments will have to negotiate with the holders of the electronic records for access to the data.
Concerns about health privacy varies considerably33. There is little research on understanding Canadian’s attitudes on the use of their personal information1. Recent work has shown that hospital discharge data can be linked to publicly available databases to identify a single individual34. Full confidentiality may not be possible; this makes strong penalties for misuse of the data very important. Senator Kirby believes that privacy will actually improve with the Electronic Health Record, since currently information is widely dispersed in various unsecured environments1. However, large-scale privacy breaches are much more likely in an electronic environment.
Privacy rules need to ensure a balance between the necessity of protecting each person’s personal health information with the need for health professionals to access that information in order to provide quality care2. Privacy cannot be guaranteed; reasonable security based on a set of commonly agreed upon rules is more realistic35.
A reasonable approach may be to:
Electronic Health Records are an invaluable resource for research. Provincially based research institutes, such as ICES, already routinely link patient data in several databases for study purposes. The EHR would make enable the creation of disease registries that can track interventions and outcomes. Previous experience has shown that obtaining individual patient consent will make registries an impossible undertaking36. Experts have stated that the shift towards privacy protection may have gone too far, and that public health is threatened by the inability to obtain complete research data due to privacy concerns37. However, Romanow would only allow researchers access to aggregate data, and would deny access to patient-level data (as is required for disease registries) until sufficient safeguards are in place2. The Personal Health Information Protection Act (PHIPA) allows research institutes to access patient-level data and to link this with other databases, provided the individual patient cannot be personally identified38. The privacy act is open to interpretation, and its application will depend on decisions made by individual Research Ethics Boards, by the Privacy Commissioner, and by various health bureaucracies.
EHRs can enable secure electronic access by patients to their own data, much like on-line banking is done today2. PHIPA explicitly allows patients to access their own charts and to request a correction if they feel a mistake has been made38. Requests for corrections may become more prevalent in the future, once ready electronic access is a reality.
There is no specific organization that represents patients in general; they may be thought of as a latent interest group39. It is likely that the first to request access and input will be well-organized, disease-specific interest groups, such as cancer societies, or the Canadian Diabetes Association. These groups may even fund interoperability project that benefit their members.
Under PHIPA, a fee can be charged for access to the chart38; possible business models will include monthly client access fees. The fees will lead to problems with equity; better access may mean more informed, better care. The government may have to mandate free access for systems that are subsidized. Disease-specific interest groups may be able to influence government policy, or to negotiate enhanced access for their members.
Computerization and interoperability in health care will increase. Factors leading towards interoperability include the drive towards common standards, and the recognition by various interest groups that data sharing is a necessity.
Governments have begun to subsidize the costs of Information Technology; the strongest interest groups are currently the beneficiaries. Hospitals and physicians are likely to have the first versions of Electronic Health Records, and will thus have an opportunity to control which other providers access the data. This will further entrench their positions as the main providers of health care. Providers that are somewhat more peripheral, due to their more limited involvement (laboratories, pharmacies), are likely to connect to the central record as data sources. They will reap benefits due to increased efficiencies, and may be able to negotiate an increase in scope of practice. Home care agencies, due to their weaker status within Medicare, may have greater difficulties connecting; because they act as intermediaries, they would benefit the most from the integrated health record. Patient access will likely be unequal, and may depend on the actions of disease-related interest groups. It is likely that health care interest groups will continue to jockey for more funding, more input, and more access to the Electronic Health Record.
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