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.