Electronic Health and Case Records- 2012

Abstract

This paper is presented in the form of a newspaper article in the year 2012. It describes the experiences of a range of health practitioners in their use of the relatively new Electronic Health Records and Electronic Case Records capability implemented some 12 months earlier. The emphasis is on how electronic health information supports patient care from a clinical perspective although there is a more technical description of the information environment at the appendix for those who want to dive into the technology.

October 2012
Sharing of Health Information finally delivers results
by Raymond Neil, Health Reporter for Aotearoa Health eNews

It's been just over 12 months since the Health Information Strategy Action Committee implemented the last major initiative across the Health and Disability Sector - Electronic Health and Case Records. For many years prior to this launch, significant concerns were raised about the ability of the proposed system to meet stakeholders' needs in relation to privacy, confidentiality and security. Other concerns included the potential for unauthorised use of patient data for research and whether the technology could support fully electronic health information, ie, that patient care would be compromised if the system failed or there was an electricity outage, etc.

To find out just how successful the Electronic Health and Case Records initiative has been, I interviewed a range of stakeholders across four fairly common scenarios:

1. Patient care in a primary care setting.
2. Provision of long term patients (in this case spinal cord injury).
3. Medical incident from an Ambulance Services perspective.
4. Patient care in a secondary care setting.

The report is supported by the appendix which contains a description of the information environment that enables Electronic Health and Case Records.

Why wouldn't it work? Back in the late 1990s when talk about Electronic Health Records began in earnest, there were a number of concerns expressed across a wide range of stakeholders including:

• Patient concerns about misuse of their personal health information (whether intentional or not) and a perception that the information would be unsafe (subject to hacking, virus attacks etc).
• Even when permission was granted, Electronic Health Records would provide clinicians with a much wider range of information than was necessary for a specific consultation and access to mental and sexual health information was a particular concern.
• Some clinicians were concerned that a wider distribution of patient health information would mean less control over patient management and/or increased scrutiny of clinical decisions, etc.

In the mid- to late-2000s we saw a significant number of developments that extended the "normal" boundaries for health information. Examples included:

• Cardiovascular Disease and Diabetes information which was captured via Decision Support Systems such as PREDICT were stored in a regional repository (although Patient Management Systems still held the health event data).
• Several District Health Boards provided GPs with real time online access to their systems.
• Toward the end of that decade, the Ministry of Health's National Systems Development Programme and Key Directions Programme delivered a number of sector-wide capabilities in support of the Health Information Strategy for New Zealand. Some of the more significant improvements were: o Connected Health facilitated high speed and secure connections between a broader range of health entities. o E-Labs, e-Pharmacy, e-Referrals and provider-to-provider notes transfer significantly improved the structured exchange of standardised electronic health information.

While there have been incremental changes since, the foundation was in place to effect a very different, and much improved information environment for the benefit of health information users and particularly for better patient outcomes as demonstrated in the following scenarios.

Scenario One - Primary Care

Dr John Matthews has a small medical practice in Eketahuna. Initially sceptical that Electronic Health and Case Records would deliver any real benefit, John is now a convert. "This initiative has totally changed how access and use information to manage patient care. The improvement has been significant in terms of rapid access to a richer set of health information and a reduction in patient interventions such as blood tests, radiology, etc."

From 1 July 2009 John was able to access health event records for patients registered in his practice drawn from the DHB inpatient and outpatient database. This included recorded allergies, medications prescribed as well as laboratory and radiology orders and results. John therefore had a complete record of health treatments for his patient and the system allows him to see these - and the medications, lab and radiology information recorded in his Patient Management System - as a single longitudinal record. The system also advises in near real time when one of his patients is treated by Ambulance Services or admitted to a hospital.

"I have one elderly patient who is regularly admitted to hospital," said John. "At his age he has trouble remembering whether he had breakfast, let alone what treatment or medication was provided during his last stay in hospital. The system allows me to see these data and, while there isn't a huge amount of detail, it tells me who I need to contact if I want more information. During his last admission, I was able to work with the hospital team - with both of us looking at the same set of data - to agree a long term care plan that should reduce the frequency of future admissions."

Being able to see what laboratory tests had been done by the hospital, and the results, also meant that John didn't have to order new tests. Simply by having visibility to all test results for a patient, no matter who ordered them, has allowed John to reduce the number of lab tests he orders by over 30 percent.

Electronic Support for Clinical Decisions is nearly as good as having a pool of specialists on call. The infrequent presentation of some illnesses and injuries that John sees means that he isn't able to maintain currency in treatment options (and it used to be that determining a diagnosis for some of these was a problem too). The decision support system helps John identify an accurate diagnosis and then provides support with treatment choices and planning care. Automatic generation of electronic referrals and forms is a bonus feature, saving time for both John and practice staff. The system was recently upgraded with online access to specialist and hospital booking systems, so the patient has the option of selecting the date and time that best suits them if they want certainty about when they can be seen.

There is a further benefit for John's patients too. Nearly half of them have subscribed to their own Online Health Portal. This is a mediated service where John and his patient work through some five or six screens of data, agreeing those items that the patient would like to have access to, and helping the patient to understand the context for these so that they don't (or are less likely to) misinterpret what they see. The Online Health Portal also allows patients to book an appointment, see test results, pay their accounts and order repeats of their medication.

"Giving access to test results was a bit of a problem at first," says John. "They wanted access the same time as me but I was concerned that they would read a negative result as being a negative outcome. What happens now is that I see test results first and can phone them, set up an appointment to see them personally or write a commentary that explains what the result means to the patient. For a number of my chronically ill patients, they know as much as I do about their condition and immediate access to test results means that they can begin to take corrective action where we've agreed what this is."

The transition to Electronic Health Records was not easy and there were a few hiccups and diversions along the way. The initial "opt in" approach did get a good number of patients subscribing to the new system and GPs were forced to maintain two separate systems to cater for the large number of patients that didn't opt in. The turning point was when the Government of the day decided on an "opt out" approach with the exception of mental and sexual health. The mail-out to every household in New Zealand explaining the controls that were in place to preserve patient privacy, and explaining how patients can restrict access to clinical information if they wish, helped assure the general population that there was much to be gained for them at very low risk.

The legislative and policy environment allowed general access by HPI-registered health workers to relevant views of a patients' health event summaries as a matter of course and, where they needed more information, the health event summary advised who they might ask for that. Audit features such as those already in place in some other government systems picks up on any inappropriate access.

Most of John's patients were pretty relaxed about the change. Some needed to see the system in operation to be assured and he has two patients who opted out.

Scenario Two - Long Term Care

Jane Smith used to think she was bullet-proof. Surfing on the top of a moving car seemed fun at the time but now, at the age of 19, Jane can look forward to the rest of her life in a wheelchair. The car was only travelling at about 50 kph but it was how Jane landed that broke her back and rendered her a paraplegic.

On admission to the Burwood Spinal Unit, Dr Joseph France was able to access Jane's Electronic Health Records and noted her current medications and an allergy to penicillin. While these events didn't influence the treatment plan that Joseph developed, it was just as important to know that nothing significant had been identified. At the end of the acute phase treatment, Jane was transferred to the care of the rehabilitation team for nursing care, physiotherapy, occupational therapy, etc.

Throughout her stay at Burwood, Jane's GP - Dr Michael Burnett - was able to monitor progress via the automatic posting of health event records at Burwood being transmitted to Michael's desktop. Michael didn't save all of those events to Jane's file in his Patient Management System but he was reassured in that he could always access any missing information at a later date if needed.

Jane is now living back at home and has a care team (mainly her mum and dad) an ACC case manager, her GP, a high needs nurse and the local hospital (outpatients) all involved in her ongoing care. Burwood too continue to be involved, monitoring progress against the treatment plan that was recorded in Jane's electronic Discharge Summary and transmitted to all of those involved (a paper copy was given to Jane's parents because they haven't yet invested in a home computer).

When Jane is scheduled to attend an Outreach Clinic - or returns to Burwood for reassessment - the Spinal Unit rehabilitation team is able to use the electronic diagnostic ordering and reporting system to initiate tests, radiology, etc, and receive the results. The one-hour appointment with Jane is optimised because the rehabilitation team is able to analyse these tests and agree any changes to the treatment plan or any specific issues that need to be addressed well in advance of the Outreach Clinic.

Before the advent of Electronic Case Records, those involved in the care of spinal cord patients (or diabetes or cardiovascular disease, etc) had to access all of the Electronic Health Records, tag those individual health events related to the spinal cord injury and then request the clinical information against each record. While this was much better than the old paper-based system (or not being able to get the information held outside of Burwood at all) it was still time consuming. Electronic Case Records changed all of that.

High Needs Nurse Samantha Walters explains. "When I'm about to visit Jane, I access her Electronic Case Records. This involves me entering her NHI and confirming the name, address and date of birth that is displayed on the screen. The system checks my HPI record and confirms that I'm entitled to see Jane's clinical information. I then select 'Spinal Cord' from a pick list and the system displays all of the health event records related to Jane's spinal cord events. The system isn't perfect and I sometimes get more or less information than needed but I can refine the search if necessary to improve the result.

"I can then hover the mouse pointer over any health event record that is of interest and a dialogue box displays a range of clinical data related to that event. I'm particularly interested in indicators of potential bladder, bowel or skin problems so it's useful to look at the descriptions against say pressure areas (and sometimes the file will include digital photos of these). If I'm really keen, I can select 'Show All Data' and I can see all of the clinical data that I'm authorised to see in a list that I can scroll through. I can change the order of that display by clicking on the column heading - for example, Date, Test or Service, Treatment Provider, etc. This is particularly useful if I want to review a particular thread such as physiotherapy treatments or pressure area management."

For Jane's GP Dr Michael Burnett, the interface between the Electronic Case Records and the Decisions Support System integrated into his Patient Management System, provides a checklist of activities specific to patients who are not able to physically present at his surgery. Reminders about performing annual medicals including diabetes and cardiovascular disease checks, etc. allow Michael to optimise the occasional visits that he does to Jane's home.

Scenario Three - Ambulance Services

Fred Jones and Mary-Lou MacPherson, Paramedics, responded to a Priority 1 call at Coastlands Mall. On arrival at the scene, they found an elderly woman unconscious - the cause of her collapse being unknown.

The paramedics began their initial patient assessment. None of the bystanders had observed the collapse or knew the patient, so they asked a responsible-looking bystander to explore the patient's handbag for any identification and medication.

The patient was found to be breathing, to have an irregularly irregular radial pulse and very high blood pressure. She also had a minor bump and laceration to the back of her head, perhaps where she had hit it on the floor.

As Fred and Mary-Lou prepared their patient for transport to hospital in Wellington - some 45 minutes drive away - they learned from the bystander that the patient's driver's licence indicated her name is Pat Southerby and provided her date of birth.

With Pat safely in the ambulance - a much more private environment than the busy shopping mall - Fred and Mary-Lou undertook a more thorough assessment. A 12-lead echo-cardiogram (ECG) shows that Pat is suffering a myocardial infarction - one or more of Pat's coronary arteries is narrowed or blocked, meaning that vital oxygen is not being delivered to all of the areas of the heart. If the heart muscle is without oxygen for an extended period of time, it will die - and so might the patient.

Mary-Lou is qualified to administer clot-busting (thrombolytic) drugs. As Fred commenced the high-speed transfer to Wellington Hospital, Mary-Lou transmitted Pat's ECG trace ahead to the Coronary Care Unit (CCU) for permission to provide this life-saving drug. While awaiting a response from CCU, Mary-Lou re-checked Pat's vital signs and commenced the required "paperwork" - an online patient report form which records what the paramedics have observed and the action they have taken during the call-out.

Mary-Lou enters Pat's identification information into the onboard computer and notes her intention to administer the thrombolytic drug Reteplase. This is effectively a "break the glass" provision to access the Health Event Summary Index and query for allergies and medications, etc. that might compromise the intended treatment. In such times, the system records the access and creates an exception report to facilitate a review of such events to confirm that the access was appropriate.

CCU calls Mary-Lou to authorise Pat's thrombolysis treatment. With the information provided by the onboard computer, Mary-Lou confidently administers the drug.

"The onboard system is both blessing and curse," says Mary-Lou. "We recognise the importance of capturing quality information and access to the NHI and Electronic Health Records saves us a lot of time entering information already known to the system and prevents any number of potential errors in treating patients. The electronic information transfer to Accident and Emergency also saves time and removes the likelihood of error from re-keying data but I'm a one-finger typist and even with the drop down lists it can take a while to capture all of the data. That aside, I absolutely don't want to return to the paper-based system we had before."

"The system isn't perfect." she continues. "The name on a drivers licence isn't always the same as the patient's name recorded in the health system and genuine duplicates - two people with the same name and date of birth - are possible although not very common."

For some 60 percent of call outs, the communications centre is able to capture the name, address and sometimes date of birth of the patient and these data are transmitted to the ambulance computer which auto-populates the patient record. Date and time of call and names of the paramedics are also automatically entered into the record. The paramedics do need to confirm with the patient or friends and family that it is the correct information (or sometimes the system provides two or three potential names depending on spelling, etc. and the paramedics can select the correct one during the examination - still much easier than having to enter it all by hand).

ECG traces and baselines, etc, are appended to the patient record and, on arrival at Accident and Emergency, all of the data is automatically transmitted via wireless to the A&E admissions system. At the end of each shift, the system downloads information to the Ambulance Services office where it is processed into activity reports, electronic claims against ACC for treatment of injuries and so on.

Scenario Four - Secondary Care

Stu Jones has coronary artery disease but his condition has been stable for the past two years and effective medication has allowed him to continue working as a sales representative. While visiting a customer in Christchurch recently, Stu experienced some severe chest pain and was transported to Christchurch Accident and Emergency. While Dr Susan James examined Stu, Emergency Nurse Arthur Somerville searched the Health Event Summary Index for information about Stu. Arthur tags the events he is interested in and the system interrogates the appropriate regional and other repositories and returns historical information about Stu's condition and how it has been treated in the past. The search is formatted to highlight laboratory and prescription information - in summary form - from the index.

This information is fed into the clinical information system in a structured form that enables the clinical information system to analyse it and generate information of value to the clinician's decision making informing her recommendations to Stu. In particular, past laboratory test results and blood pressure readings are displayed as a graph with drill down capability should more detail be required.

The decision is made to perform a cardiac catheterisation and Anaesthetist Mike Andrews and Cardiologist Helen Burrows are paged.

Mike's pre-op preparation for both elective and emergency surgery has changed significantly since the EHR was implemented a decade earlier. Mike always accesses the EHR as part of pre-op as he finds that information provided to him by patients and (less so these days) their healthcare providers can contain inaccuracies or omissions. He has his clinical system optimised to quickly access and display the sort of summary information he is interested in - generally medical warnings and alerts, pharmaceutical use and laboratory test results.

Mike operates in a typical "surf and drill" mode. His screen displays the existence of index summaries, their date and type. The system routinely displays 30 to 50 search results in each category of interest. His system is set up to present them in reverse date order with most recent at the top.

Mike used to have the parameters set more tightly but experience has taught him that it only takes a few seconds to select and click on index summaries that look interesting or that have tripped a "flag" in his system. He has his first level of drill-down to view the full summary record and finds that he only occasionally needs to clink on the link to the full record back in its source system view the record in detail. Mike also likes the fact that he can use the summary record to identify his patient's health care providers and he has been known to call them on occasion as part of his pre-op process.

The cardio catheterisation identifies a blocked blood vessel and the problem is corrected by angioplasty. Stu is subsequently is discharged to the care of his GP.

On returning home Stu makes an appointment with his GP. Stu's electronic discharge summary had arrived in the intervening period and his clinical record on the Patient Management System had been updated. While talking with Stu his GP uses the index record to access the full record in the hospital's system to check a point of doubt, but notes the prescription and dispensing details from the respective index records without needing to query the originating systems and is able to modify Stu's ongoing medication in line with that which Christchurch Hospital had prescribed.

Conclusion

Although the journey hasn't been easy (and there are still a few minor issues to resolve) there are lots of positives in using Electronic Health Records and Electronic Case Records. I have no reason to doubt the Ministry of Health's comment that the audit process has been operating for over 12 months and has yet to identify any misuse of health information as a result of this new information environment.

All of the medical professionals that I spoke to appeared very aware of the need for patient confidentiality to be protected and I have no doubt that, were anyone concerned about this, they would have told me. None did.

The retention of clinical information at the point where the interface with the patient occurs, and the transmission of a health event summary containing the minimum of information to a central location as a national index, seems to be a very practical approach. The majority of information need by a subsequent treatment provider seemed to be satisfied just by knowing that a particular health event had occurred and what the outcome of that was. Requests for clinical information appeared to be relatively rare in comparison.

On the other hand, the information needs of Public Health Organisations, District Health Boards, the Ministry of Health and ACC - and not forgetting health research projects - are very simply and automatically met by regional and national collections of minimum datasets.

This isn't to say that the system is perfect. Like all information systems, it will evolve. The system doesn't cater for mental and sexual health yet and some believe that the sensitive nature of these from the patient's perspective means that they will always be separate. For everything else though, it's a damn good start.

Appendix - How does it work?

The following illustrations identify the key components that collectively comprise the New Zealand Health Information System. A surprising feature of the design is that very few components are held in a central location:

• The NHI and HPI;
• Code sets such as SNOMED, ICD10AM, ASIA, Ethnicity, etc; and
• The Health Event Summary Index.

Data mining tools are held centrally because that is the most effective way to generate specific integrated views of data as are the integrated views that comprise the National Collection, eg, National Immunisation Register, Cancer Register, etc.

There are three levels of detail for any single health event where the critical characteristic of level three is that the existence of a health event is separated from the clinical information related to it:

1. The clinical record is held on the patient information management system at the point of care; general practice, hospital, practitioner nurse, physiotherapist, etc.
2. The health event record is a clinically relevant information summary specific to a health event type - diabetes treatment, diagnosis of an injury, immunisation, prescription, etc, and it is the minimum data required to manage a particular illness at a community, district or national level (for the latter, the data typically comprises the minimum dataset for the appropriate national collection). Therefore, the distribution of these data varies with each type of activity. The National Collection (held by NZHIS) is an extract of appropriate health event records from those community and/or district collections.
3. The health event summary comprises the absolute minimum of data required to identify that a health related activity has occurred i.e. is devoid of clinical data, but provides the mapping to where the health event record and the clinical record related to those events can be found. These records are transmitted to the national Health Events Summary Index.

Access to these data is through one of three means:

1. Using Data Enquiry and Reporting tools to access integrated views such as the Rheumatic Fever Register, Cancer Register, National Immunisation Register, etc. These are national collections or the equivalent and the records contained within them are anonymous as a rule.
2. Accessing health events specific to an individual patient via the Health Events Summary Index.
3. Research projects - with appropriate Ethics Committee approval - may construct project specific collections using a combination of 1 and 2 above.

Health Event Summary Data Structure

The key to both Electronic Health Records and Electronic Case Records is the health event summary. These records are stored in the central database and form the common index for all health information users who are authorised to enquire it. The data structure for health event summaries is as follows:

Auditing Use

Of particular interest is the audit function. The HPI CPN is linked to the user identifier assigned by their organisation for each health worker. It not only allows systems to determine the role that an individual has (and therefore what information and systems they can access) but whenever they - or the system they are using - interrogate the Health Events Summary Index, the system records their HPI CPN against each and every health event summary accessed.

This is the key to maintaining privacy albeit retrospectively. The system routinely reviews the user log and reports activities such as:

• Access where the Public Interest Flag is set to "Y" but where the patient is not registered with that organisation, eg, not enrolled in that PHO or admitted to that hospital.
• Unusual patterns in use.
• Global searches (trawling).

Longitudinal View of Data

Many GPs have dual screens on their desktop. One permanently displays the Practice Management System and the other is used to interrogate the Electronic Health Records (including health event records from that GP's PMS). There are distinct advantages in being able to look at the detailed clinical information for a patient on one screen while displaying the results of a search for a specific collection of events such as blood tests or radiology, etc.

Footnotes

* All references to people and organisations are fictitious