"R.E.A.C.H." Clinical Portal Making a Difference in Doctors' and Patients’ Lives

R.E.A.C.H. or "Rapid Electronic Access to Clinical Health Information"is an electronic health information portal that allows authorized users access to their patients’ clinical information through a secure web-browser, whether inside or outside of the hospital.

This means Lab and Diagnostic test results, images, transcriptions and progress reports written (at any one of the REACH partner Hospital's) can be viewed immediately by a Physician treating the patient. Currently the REACH portal includes The Credit Valley Hospital William Osler Health Centre, and Halton Health Care. Trillium Health Centre and Headwaters Health Care Centre will be joining the network soon and Hamilton Health Sciences and the Scarborough Hospital also use the same vendor solution. Sharing Patient's clinical information is important because patients move between facilities for across a region to access different types of diagnostic tests and/or procedures---that are not necessarily performed at all facilities. At the Credit Valley Hospital, one of the Physicians was asked what he thought of this new EHR initiative. Here’s what he said.

Dr. Tom McGowan’s Notes*: Wednesday October 15, 2008
Sitting in clinic today it struck me how quickly REACH has changed how I work. Today was a day when I saw new cancer patients with new problems. Of the four new patients I saw today, I needed to look into REACH to get information from other hospitals on two of them. It took seconds to look them up, and find the information I needed from the other hospitals. Before REACH, getting that information would have taken anywhere from 15 minutes to hours, and usually many phone calls.

Given that we’re the only Radiation program in the region, we always see patients who have had all, or large portions, of their care elsewhere. Most of the time the referring doctors make sure all the information is faxed over when the referral is made. Most of the time we can make the decisions we need to make with the information we have. But if there was a recent test, or clinic visit, then we should see that report before we make a final treatment recommendation.

There’s wasted time and effort when information comes in piecemeal. There are times when the results of the test aren’t available when the patient is first referred by their medical doctor (MD). Sometimes the referring MD will send it when it’s ready, and sometimes not. We can’t expect that to happen because it’s too much to ask a busy referring doctor to keep track of upcoming tests, and make sure they’re faxed to us, when ready.

Even if it is sent after the result is in, we’ve got to be sure the new information gets attached to the original. While this normally happens, I’ve had cases where I’ve had our staff call a referring hospital to get a test result faxed over. Sometimes they say they’ve already sent it but we don’t have it. So we get them to send it again, only to find it went to my office rather than my clinic.

When there appear to be duplicates of the same test, there’s more time wasted while I compare the results from the two documents. Only then can I be sure it’s not new information that will influence the patient’s care. It’s pretty obvious that this isn’t the most efficient way to manage anybody’s time. Now I have an advantage that I hadn’t really appreciated until I started to use the REACH portal. By looking at the records from other hospitals, we can sometimes see results of tests that are relevant, but that the patient didn’t realize could be useful, or had completely forgotten about. This type of thing doesn’t happen very often, but when it does, it matters.

So getting back to today; I had two patients that had information I needed from other hospitals. Thanks to REACH, I had it, easily after looking for a few seconds. I didn’t have to figure out what to ask for, where things might have been done, and deciding whether I really needed it in the first place. I was able to spend all my clinic time doing clinical work, seeing my patients, explaining things to them, and figuring out what they needed to do next. And that makes for a satisfying day.

*Dr. Tom McGowan is Physician Director, Radiation Oncology at The Carlo Fidani Peel Regional Cancer Centre located at The Credit Valley Hospital.



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Original article published in "A Credit to your Health" AUTUMN 2008 / VOLUME 10 ISSUE 4.

RESPECT, TEAMWORK AND COLLABORATION

By Michelle DiEmanuele, President and CEO of Credit Valley Hospital

Hospitals are huge and can be intimidating institutions, not just for the patients, but for a new CEO such as myself. I am quite frankly overwhelmed by the amount of teamwork and collaboration that exists here at Credit Valley and beyond our doors with our health-care partners. This is great news, for if we are to move forward with our quest to deliver patient and family-centred care and to ensure equitable and sustainable access for all, we must forge even stronger relationships. And we’ll do so if we make teamwork, collaboration and partnerships our top priorities.

Gone are the days when hospitals competed with one another for scarce financial resources in order to duplicate programs and services at each facility. What’s critical is the idea of mutual respect - within the hospital and broader health-care environment recognizing the significant role each facility, each program and each individual plays in the overall delivery of good patient care. It is critical to maintaining that community connection and understanding as we build and reform the system.

The spirit of cooperation has been accelerated through design and demand of the various regional health systems across the country. Even before the formalization of such systems, there have been many informal and spontaneous examples of co-operation among health-care facilities. I’m hugely impressed by these initiatives that often begin at the community and grass-roots level.

Here at The Credit Valley Hospital in Mississauga, Ontario, we are working closely with our neighbouring hospitals and other health-care partners to offer our patients more comprehensive and coordinated services, each through our own regional specialities. The patient experience is further improved because in many instances, they no longer have to travel to Toronto or Hamilton or other larger centres for their care, reducing their travel costs and anxiety.

In order for this collaboration to work, we have all put new resources into making sure our patients are being informed and navigated appropriately to find the care they need, where and when they need it. It’s not always where they thought they might get it. In fact, it may not even be in a hospital environment. That’s asking a lot of our patients. Doing our best to make the move between facilities and caregivers as seamless and painless as possible is paramount to a good patient and family-centred experience. One way we do that, is through the REACH web portal.

The collaboration initially between six physical hospital sites in Peel and Halton regions (Credit Valley, Halton Health Care and William Osler Health Centre) means all of our clinicians have instant access to patient health information stored electronically at any of the hospitals through a secure network called REACH -- Rapid Electronic Access to Clinical Health information. The web connectivity is growing between more hospital sites which will allow even more physicians to access clinical data from disparate systems through one unified view. This allows physicians to easily review their patient’s records, lab results, cardiology images, diagnostic (PACS) images, transcriptions and progress reports. Because the ehealth record shows their patient’s entire health history, important information such as medication allergies will be revealed even if the patient inadvertently forgets to mention the allergy at the time of a visit to any of the health facilities on the REACH network.

Within our own four walls at Credit Valley, the team approach to problem solving has made significant improvements toward patient and family-centred care, most recently in our regional cancer centre. Cancer patients have spent seemingly endless time between appointments for tests and treatment in the same building. The Stream Team, made up of oncology doctors and nurses, clerks, lab, pharmacy and information systems with input from staff, patients and volunteers, set out to redefine their patients’ experience. They charted every step, every process, every wasted minute and after several months, they had streamlined ten processes to seven and decreased the patients’ waiting time by almost two hours! Nurses and doctors collaborated on patient assessments; volunteers took on responsibility to ensure patients moved smoothly from one process to the next and now, there’s the potential to see even more patients each day.

I believe leadership happens at every level within an organization that values and respects the roles of every individual – not just the caregivers – but the patients and families we are here to serve. I saw that first hand as I worked alongside the men and women cleaning stretchers in our emergency department; as I sat beside the charge nurse who was more like an air traffic controller as she juggled patients, personnel and stretchers throughout her shift. I believe the role of leadership is to create the conditions for success not just in terms of the hospital, the system or even the government. Everything we do, every decision we make, should be prefaced with the question, “what’s best for the patient?” This isn’t easy. It’s takes a sense of respect for everyone at that table and the courage to push the traditional boundaries and norms to embrace innovative solutions. But without that respect, the kind of changes our hospitals need will be too slow for what our patients deserve – and increasingly, demand. Respect, teamwork and collaboration have and will make the difference in elevating patient care.

Is that respect there? You bet. Having re-entered the health-care sector, I’m humbled daily by the unbelievable dedication on the part of doctors, nurses, clinicians, and administrators who put their patients first in a system where that isn’t always easy.

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Michelle DiEmanuele is the President and CEO of the Credit Valley Hospital in Mississauga Ontario.

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REACHing for Leading-Edge Patient Care with e-Health

By Dan Germain, VP, CFO and CIO at the Credit Valley Hospital and former e-Health lead for the Mississauga Halton Local Health Integration Network (LHIN.)

In Ontario, very few hospitals can share their disparate Electronic Health Records (EHRs) between providers or with patients/clients. To facilitate sharing of patients’ EHRs among physicians and clinicians, The Credit Valley Hospital (CVH) joined William Osler Health Centre (WOHC) and Halton Healthcare Services (HHS) to establish an electronic clinical portal. Trillium Health Centre (THC) and Headwaters Health Care Centre (HHCC) have also entered into this partnership and will go live in the next few months extending the Rapid Electronic Access to Clinical Health (REACH) EHR initiative to all hospitals within two LHINs serving a catchment area of 1.8 million Ontario residents (about 5% of the total Canadian population). This existing collaboration between six physical hospital sites in the Peel and Halton regions and two LHINs – the Mississauga Halton LHIN (MH LHIN) and the Central West LHIN (CW LHIN) – is unprecedented and a landmark partnership in the Province of Ontario.

The REACH Clinical (EHR) Portal enables all associated sites’ clinicians to have instant access to longitudinal patient health information including but not limited to allergies and alerts, lab and diagnostic test results, diagnostic images and reports, pharmacy data, transcribed notes, scanned images, progress reports, and other important health-related information. A thorough Privacy Impact Assessment was also perforemed to ensure REACH meets all Ontario privacy standards.

At each constituent hospital, patient data is easily accessed today through our secure network solution and consolidated into one customizable, patient-centric view. Based on a federated data-model, patient data remains in its original format on its respective (legacy) vendor IT system, allowing for all systems to be leveraged across multiple domains, rather than replacing them. Additionally, using a federated data-model ensured implementation of the REACH clinical portal was extremely fast and inexpensive especially when compared to other more complex solutions. The partnership between REACH Hospital stakeholders not only enhances patient safety and satisfaction, it provides an intuitive web-based interface that is accessible anywhere.

The REACH portal was created using MEDSEEK in partnership with Agfa HealthCare, both leading providers of enterprise-wide e-Health solutions. This simple portal solution is also vendor-agnostic, so the system is compatible with almost all health information systems, diagnostic imaging vendors, and other suppliers. “Over 160 interfaces are available on a plug-and-play like basis,” says Dan Germain, Vice President, Chief Financial Officer and Chief Information Officer at CVH.

Dr. Paul Philbrook, CVH’s Chief of Family Medicine and Chair of the Central West – Mississauga Halton Community Family Medicine/Public Health Network of Physicians, along with his colleagues, championed the idea of allowing affiliated physicians the opportunity to access their patient records across all local hospital sites. He explains, “The REACH portal is a welcome advancement of access to patient information and integration locally. This will enhance patient care and safety.”

Germain, also former e-Health lead for the Mississauga-Halton LHIN, further explains, “The REACH portal was created for physicians and clinicians to improve patient care and provide real-time access to existing patient records across the region. Although more time is needed to determine the quantifiable benefits of such a solution, it is expected that the REACH Portal will assist in avoiding potential medical errors and offset the possibility that other critical information is inadvertently missed for elective, emergency admissions or outpatient visits. Saving just one life by using this system will pay for itself.”

To date, the REACH EHR portal is getting over 9,000 views per month within the Mississauga-Halton and Central West LHINs---with one-third of those views made by Physicians looking at patient data from other hospitals. Over 1,000,000 outpatient visits and 100,000 discharges per year are now available within the REACH portal at this time. “The clinicians who are accessing patient information via the REACH portal love it,” says Germain. The portal has the ability to consolidate information about a patient/client from other sources (e.g., Community Care Access Centre’s), but currently, the focus is to bring more hospitals on stream and ensure as much clinical data is contained in the portal as needed.

The Mississauga-Halton and Central West LHIN's are fortunate in securing both the commitment of all regional hospitals to join the REACH portal, and also engaging a vendor solution that was both comprehensive and transferrable outside the walls of any specific site. This collaboration between regional hospitals is a stepping stone toward the overall e-Health goals for the province of Ontario, for example, building a standardized methodology to identify each unique patient and then consolidate electronic health care data from a variety of sources (e.g. hospitals, private laboratories, pharmacies, nursing homes.) It should also be noted that Hamilton Health Sciences and the Scarborough Hospital are also using the Medseek portal (distributed by Agfa HealthCare in Canada.) Ottawa-area Montfort Hospital has also signed on, but have not gone live yet. REACH will be ready to plug-and-play into Provincial EHR Initiatives once available.

We keep hearing from patients that they want to be more involved in their own health care. "Providing patients with electronic access to their health record and wellness information– that’s our next goal,” says Germain. “We can make our collective vision happen a bit sooner – anything is possible." Now that our disparate Clinical Information can be accessed and leveraged, a REACH Patient Portal is on the horizon. Germain explains that this Patient Portal initiative will be especially beneficial to those managing chronic disease prevention and that it is imperative that that patients have access to their own health records in a secure manner, as well as access to reliable health and wellness information.

Dan Germain is the Vice President, Chief Financial Officer and Chief Information Officer at The Credit Valley Hospital.

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Mississauga's William Osler Health Centre goes high-tech with patients' records

The Brampton Guardian | Monday December 24 2007 | PETER CRISCIONE

BRAMPTON - William Osler Health Centre (WOHC) is among three hospital sites in southern Ontario equipped with the ability to share patient data through a new web-based electronic healthcare record (EHR) viewer.

Agfa HealthCare, a leading provider of IT-enabled clinical workflow and diagnostic imaging solutions, unveiled recently new technology (their Clinical Dashboard platform) that allow's users to easily access critical patient information from any personal computer, handheld, or tablet PC with Internet access. For instance, data at WOHC's Etobicoke and Brampton sites can be retrieved and shared with Halton Healthcare Services (Oakville, Milton, Georgetown) and Credit Valley Hospital in Mississauga.

This eHealth portal (EHR Viewer) solution serves the nearly one million residents living in the communities of Brampton, Etobicoke and Georgetown.

"Agfa's proven federated portal model is a 'win-win' situation for hospitals - simple in premise, and deployed at a fraction of the time and cost of competitors, with immediate return on investment," said Dieter Pagani, director of Agfa HealthCare's Enterprise Solutions Group. "These hospitals are truly eHealth leaders in Ontario, and have taken a quantum-leap towards eliminating the traditional barriers associated with sharing data." Company officials say this vendor-agnostic technology promises to fundementally alter the Canadian healthcare landscape.

Agfa HealthCare's eHealth solutions are customized to meet the needs of each hospital and their unique stakeholders, "and built on a complimentary core foundation that is web-based, scalable, extensible and focused on delivering fast return on investment." The new technology ensures all three sites (including Credit Valley Hospital and Halton Health) can securely share all patient records---regardless of IT systems or vendors.

"This makes us trailblazers," said Judy Middleton, Chief Information Officer for WOHC. "If a physician has a patient at Osler, and the patient says 'I've been at Oakville or I've been at Credit Valley', then all the information from their visits will be accessible by the physician. So in terms of expediting treatment and care, you have much more information (at your disposal)."

Middleton said other hospitals in the Central West Local Health Integration Network (LHIN,) of which WOHC is a part of, are taking steps to adopt this innovative technology. In achieving this level of interoperability, William Osler will be able to reduce duplication and errors, while increasing the level of accuracy of information in terms of diagnosis, Middleton said.

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[Original Article]

Rebooting Canadian Healthcare using eHealth Portals

by Dan Germain, VP, Chief Financial and Information Officer, The Credit Valley Hospital as published in Canadian Healthcare Technology Magazine | Vol.12, No. 8 | Nov/Dec 2007.

According to recent statistics from the Canadian Institute for Health Information, as many as 24,000 Canadians die each year from adverse events like surgical errors, patients receiving the wrong medication, and hospital-acquired infections. As the practice of medicine today is inherently dependent upon healthcare technology, the accountability and sustainability of our healthcare system depends on the ability of healthcare practitioners to find ways of gaining efficiencies and increasing effectiveness in every aspect of their daily activities.

All levels of government across Canada are experiencing pressures today to cut healthcare delivery costs, while increasing the level patient safety and care. With this demand for managed care, technology is quickly evolving to meet new and more complex requirements, with significant benefits to medicine and healthcare overall. As Charles Darwin so aptly identified: “It is not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change.” In the past, the acquisition of technology was viewed as the answer in and of itself. Decisions about technology and usage were typically driven by the question of how to improve the effectiveness of what hospitals were already doing. However, today’s information systems should be viewed as a vehicle to transform current hospital processes into what they could and should be doing.

At the same time, there is a demonstrated understanding for the need to update technology systems in order to extend a national electronic health record (EHR) in Canada. Healthcare stakeholders agree that technology is critical to facilitating necessary information-sharing across disciplines and venues. Driven by Canadian Health Infoway, this movement embraces the need to evolve healthcare informatics toward a more open, standards-based, patient-centric model that brings together all imperatives: clinical, administrative, financial, managerial, and human resources.

With the information-sharing capabilities provided today by a rapidly expanding number of new technologies, Canadian healthcare organizations can leverage a crucial tool-set to support informed medical decisions at the point of care. To this end, healthcare providers and vendors both agree that a consistent, standardized way to share information between healthcare stakeholders can overcome the barriers to attaining an EHR.

One destination; Many paths
When any healthcare organization sets out to extend a ‘cradle-to-the-grave’ EHR – readily accessible via the Internet and linked to clinical protocols and guidelines — most people picture only one scenario. In this scenario, a user enters a patient query into one computer system, and that query goes to one source where all the patient information has been stored in a single “centralized” database, or vertical architecture. The system searches one database and returns the queried information to the user. The problem with this scenario, is that information is not best accessed in this manner as the required patient data resides somewhere in a disparate system.

However, this is not the only option. Instead of duplicating that patient data in a new centralized system, the healthcare organization could leave the existing data in place. Then, when the user enters a query about a patient, the system logically gathers the appropriate patient data from wherever it is stored. This approach is called a “federated” database model and employs a horizontal architecture. Anyone who uses the Internet takes the delivery of content from multiple systems for granted. Almost every Web page is automatically assembled from multiple sources, and employs a federated database model. One simply clicks a button and data is retrieved from disparate databases and servers.

By definition, a federated database is a collection of data stored on multiple autonomous computing systems connected by a network that is intuitively presented to users as one integrated database. Additionally, using a federated portal approach allows bandwidth, hardware, administration, and other infrastructure costs to be distributed over time, keeping pace with the development and deployment of the facility. This can significantly reduce networking and system-interfacing costs and opens up a number of added functional possibilities by extending data to the organization’s value chain delivering clear, tangible benefits for your short and long term needs. Compared to a centralized portal, today’s federated architecture can achieve equivalent or better results, at a fraction of the cost and time.

Follow the leaders
The Credit Valley Hospital (www.cvh.on.ca) is a vibrant community hospital providing leadership in the delivery of primary, secondary, and tertiary health care services to the people of Mississauga, Ontario and the surrounding LHIN-6 region. Serving more than 5,400 visitors daily, The Credit Valley Hospital (CVH) has provided patients with access to cutting-edge medical research, programs and treatment since 1985, recently opened a new Ambulatory Care Wing that offers both systemic (chemotherapy) as well as radiation therapy as a regional Cancer Centre. By 2011, CVH will have completed another expansion adding 145 new inpatient beds to the community. . As such, it’s not surprisingly to imagine that the 2,700 staff and nearly 400 physicians generate and store a significant amount of disparate data.

CVH recently implemented a MEDSEEK Web solution which facilitates various healthcare organizations to support vendor-neutral and enterprise-wide system interoperability. Due to the regional programs at CVH, it was critical that all departments were able to share data amongst its providers. The goal was to be able to provide the same information sharing capabilities among various healthcare facilities, nation-wide, as well as reduce redundancies like test duplications due to missing or unavailable information. After implementing the federated portal, CVH saw an immediate improvement in both patient flow and medical care throughout the hospital. Today, patient-data is immediately available from any computer with Internet access, whether the disparate data actually resides at the two sites (Etobicoke and Brampton) of William Osler Health Centre (www.williamoslerhc.on.ca) or at the three sites (Oakville, Milton, Georgetown) of Halton Healthcare (www.haltonhealthcare.com). The population served by these portals exceeds one million people residing in Mississauga, Brampton, Halton Hills, and Oakville.

Agfa Healthcare’s Clinical Dashboard™ (powered by MEDSEEK) is the only proven federated portal model in the country that addressed CVH’s unique pain points in an efficient and cost-effective manner. The portal met the organizations rigorous selection criteria by offering superior software and services, clinical integration experience, and the ability to expand to future enterprise eHealth solutions. The combination of ease of use, real-time data access and enhanced clinical functionality enhances patient care and clinical excellence, while extending a virtual EHR. In addition, the solution was implemented in only 90 days – at a fraction of the cost for a centralized portal solution – which was vital.

Jeff Lamb, Executive Vice President of Sales at MEDSEEK confirms those sentiments: Enhanced integration functionality throughout a medical enterprise yields immediate operational efficiencies including reduced paperwork, improved communications, better workflow management, and stronger relationships among clinicians, patients and the community. For CVH specifically, having connectivity to William Osler and Halton Healthcare facilities, the portal provides a virtual medical record of all patient data across multiple LHINs. This not only improves physician efficiencies but also contributes to enhanced patient safety and care.

The federated portal solution evolves Canada’s healthcare delivery toward a more open, standards-based, patient-centric model, at a fraction of the time and cost of the centralized portal approach. CVH expects this solution to significantly reduce surgical and medication errors while making lives easier for staff. Additionally, as CVH expands its portal solution to support PDAs, the portal will become even more valuable as patients will be able to ask their physician specific questions and have results available immediately. Ultimately, however, the biggest winner is the Canadian patient and taxpayer.

There’s no argument about the need for a better way to access information, reduce medical errors and increase the quality of patient care, and that technology plays a critical role in making this happen. However, using technology the way it’s always been used is not the best approach for the kind of radical change needed. Through examples like CVH, it’s clear that interconnectivity and information-sharing between hospitals, LHINs, and even across provinces is a reality, and can significantly benefit from a new, “federated” way of thinking.

Patient Destiny: Consumers must have access to their health records

By Kevin J. Leonard and David Wiljer

Just as customers accessing their information have reduced banking industry costs, it is a general assumption that the same will hold true in healthcare. As more patients bypass the “hands-on” personal method and obtain information for themselves, it is estimated that great savings will be gained, and consequently, a tremendous amount of strain will be removed from the system.

However, very seldom is patient information (e.g., the specific results of diagnostic tests) ever shared with the patient. As a result, it is very difficult for patients to enter a dialogue with their doctors about treatment, because the healthcare provider is the only one with the information. One truism seems to be constantly ignored: It is impossible for patients to manage their health without the requisite information! This is not just a passing fad or part of a catchy slogan, but rather a conclusion that is based on a number of logical premises, outlined as follows:

Times have changed: This may not appear to be all that insightful, at first glance, but this premise contains very important building blocks. We are no longer in an era where businesses and governments tell people what to do and when. The rise in consumerism has created the demand from the public for better information and better service. The public wants information in the way they want it, when they want it. We have rapidly progressed through the Information Age into a “Knowledge Era”. Information that is meaningless to consumers has no value. In the next 20 years, the industries that will be successful will be the ones that can take advantage of technology and deliver pertinent information, which is “targeted knowledge” channeled down to the individual consumer.

Patients are at the centre of healthcare: We have seen many Hospital Mission statements echoing this same message – changing to patient-centered care. However, this ‘mantra’ has not been firmly understood or appreciated. Without the patient, there is no need for healthcare professionals. The patient is the one constant throughout all of the healthcare system.

What patients do want, and will demand, is better information about the system, about who does what services, and about how well they perform these services. Answers to these questions will allow consumers to make informed decisions surrounding their care.

Patients want access to their own patient information – and they want to be able to understand what it is that they are reading. In particular, they want to know more about their illness or disease, and they want information on treatment options and success rates. Often, they would like to get in touch with other patients to exchange experiences and to get advice. After all, it is only when they interact with other patients that they get real information about what they are going, or will go, through.

Ultimately, patients are the decision makers: When patients are faced with difficult healthcare questions, they seek advice – from their doctors, other health professionals, and their own personal network. Even though the physician will provide the best medical support, ultimately, it is the patient who has to decide whether they want this drug treatment or that surgery.

It is understood that not all patients may have the maturity or cognitive ability to comprehend the decisions that they have to make. Many caregivers have used this argument to withhold information; but, in actuality, this rebuttal only applies to a small percentage – perhaps, to 20 percent of our population. The remaining 80 percent have the ability and the right to make their own decisions. What they lack is the medical background in order to facilitate all the information and to process it in order to make an informed choice.

It is our belief that in the healthcare system of the future, we will see physicians (and other professionals) act as advisors to patients, rather than the old model, where patients are told what to do. Gone will be the day where patients will feel that they are not free to question facts or to seek options.

Decision-makers need information: It is well understood in information theory, and in the decision analysis literature, that decision-makers need information to assist in making any decision. It then becomes clear that we must get the critical information to the patient in order for them to make informed decisions. This means that the focal point of the healthcare system of the future must be on the patient record, since that is the only point where all the data reside. In order to move the data and information around efficiently, it is obvious as well that this record will have to be in an electronic form.

Conclusion: Patients must be able to access their health records and other patient information if they are to make informed and effective decisions about their health management. Consequently, it is impossible for patients to manage their health without this requisite information!
Access to records improves satisfaction for lung transplant patients
Over 40 percent of patients have at least one chronic illness, accounting for nearly two thirds of all medical expenditures. Because of their long timeframe and high attendant costs over time, chronic illnesses lend themselves to electronically mediated self-management tools. Prototypes of web-based, patient-centered Information and Decision Support Tools have been demonstrated to improve self-management of illness and enhance understanding of the complications of poorly controlled disease. Patients living with chronic illness are also more likely to use health information than their healthier counterparts, although each chronic illness has specific, recognizable challenges for affected patients in symptom comprehension, information management, task fulfillment and social interaction.

It is our hypothesis that leadership will come from these chronically ill patients (either individually or within a group) by demanding better access to health system and service information. In recent research, we interviewed patients on a number of “access to information” issues. Unfortunately, asking patients (or computer end-users or stakeholders) what information they would like to receive is not efficacious due to the fact that end-users are normally not well versed in “system options”.

What stakeholders are very good at, however, is identifying functionality they would “like to have” at the moment that they experience it. As a result, we have engaged different groups of patients suffering from a chronic condition. In this instance, we present results on post-lung transplant patients in both passive (survey interview) and active (simulation) environments to elicit their needs and wants. (This group was analyzed due to accessibility, however, it is believed that many of the findings are applicable across a number of illnesses or chronic conditions.)

Almost two-thirds of these lung transplant patients (63 percent) had seen some portion of their medical record (most commonly blood work or X-ray results) and a similar percentage believed a personal medical record would help them manage their personal healthcare. The most common reason respondents wanted access to their medical chart was to enhance their understanding of their medical condition. This desire to have further access to personal medical information was expressed despite a comprehensive patient education program provided by the transplant program, and despite the fact a high degree of patients felt they were provided with an adequate degree of information upon discharge from hospital. As a whole, this group appears to have a high level of interest in their medical information and can be described as active participants in their care.

The patients were then asked what they believe would be the most valuable aspect of having access to their medical information. Respondents were encouraged to check all that apply:

• 57 percent of patients believe that access to their medical information would help enhance their understanding of their medical condition.

• 13 percent of patients indicated that access to their medical information would help ensure the information was available to their family doctor.

• 13 percent of patients felt access to this information was important in case of an emergency.

Further, over 60 percent of patients believe that having access to information about the medical care that they receive would help in managing their healthcare while at home. The difference in the phrasing of each question may illustrate the importance patients’ place on information necessary for self-management over information about their hospital stay. Sixty percent of patients believe that if they were provided with their medical record, they themselves and their family physician would use it the most. Related to the use of the patient’s medical record, 73 percent of respondents did not have any concerns about a family physician, family members or other medical specialists having access to their record.

Patients were also given the chance to choose what type of information from the hospital they would find useful to help manage their care at home The most popular choice was the lab test and results (67 percent) followed by a summary of their medical history, medication information (history and current), contact information (specialists and emergency contacts) and blood pressure/ temperature charts. Family and personal history and height/weight charts were not strongly endorsed. Only 17 percent of all respondents felt the inclusion of an allergy history was necessary in their personal health record. Given a choice, 63 percent of patients would want this information as a paper copy. Other preferences included CD (13 percent), secure Internet (13 percent), and other storage device (10 percent). Forty-seven percent of respondents indicated that they would find it useful to have the entire lung transplant manual in an electronic format.

The survey indicates that lung transplant patients are interested in accessing their personal health information to support their health management. At the time of the survey, well over half of the sample group was connected to the Internet and according to the literature, it can be expected they are accessing health information through that medium. This desire stems from increased self-reliance in the management of personal health and the desire to take a more active role in the medical decision-making process. While the effect that this information may have on patient health outcomes is not clear, access to personal health information is associated with improved patient satisfaction. As patients move to a more self-reliant role in the management of their health, the demand for personalized information will only increase.

Conclusions: We must begin to put pressure on the system to support patients in gaining access to their own health information. As presented herein, this is needed and soon will be demanded. Ultimately, this inevitability has been framed by the term Patient Destiny, where patients are actively involved in all healthcare decision-making. This is an infeasible proposition in a paper-based system, which means we must move to more Electronic Health Records or EHRs. Since patient access to individual healthcare provider organizations’ health record systems appears to be almost as unviable, due to limitations in data format, unique patient identifiers and system constraints, one appealing approach is to follow the path whereby patients interface with their health-related information across the many providers in a Web 2.0 environment.

A web-based patient interface between consumers and the health system could help patients search for quality information and link them to resources that address their needs. In detail, the benefits for the consumers could be as follows:

• Obtain quality health information, quickly and efficiently, based on personal and contextual needs;

• Access an up-to-date consumer health directory with listings and satisfaction ratings of trusted healthcare providers in Canada and elsewhere;

• Connect with like-minded users to share health experiences, knowledge and resources;

• Allow consumers to use monitoring tools to manage active lifestyles and primary healthcare conditions such as blood pressure, weight and high sugars;

• Provide a pathway to their own health information and expectations; and

• Design a reward system for their investment in health, well-being and where health-conscience behaviour is rewarded within a ‘point collection’ system.

In essence, a health sector-wide strategy of patient awareness and education is now required. All consumers of healthcare – the healthy and the ill – need to be presented with a forum for a comprehensive discussion on healthcare, one that deals with the trends of rising consumerism and greater expectations relating to information access and delivery. We must promote an “effective and coordinated consumerism” perspective within healthcare. Hopefully, this will provide an incentive to all consumers to become more involved in their own care and health management and to demand more from health providers.

Kevin J. Leonard is Associate Professor in the Dept of Health Policy, Management & Evaluation, University of Toronto.

David Wiljer is Director, Knowledge Management and Innovation, at Princess Margaret Hospital, University Health Network, Toronto.