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
Tel: 416-222-3011
Fax: 416-221-3097
Email:
mgreiver@rogers.com
Title: Making the
data follow the patient: towards an
integrated Electronic Health Record in Ontario
Executive
summary
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
Physicians
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.
Home Care
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.
Clinical
laboratories
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
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.
Government
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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