Patient Self-Management: Raising Patient Perceptions of Healthcare Value and Quality

August 1, 2004
Supplements and Featured Publications, Decision Maker News in Managed Care - Proceedings from the 2004 Cambridge Healthcare Summit, Part II, Volume 10, Issue 2 Decision

Educational Objectives

After participating in this activity, participants should be better able to:

  • Examine the issues surrounding patient self-management from the perspective of the patients and employers.

Describe benchmarks that could be utilized to help patients become more involved in their healthcare decisions and increase their satisfaction with health plans.

  • Discuss the role health plans will play and the preventative measures they can take in the event of a bioterrorist attack.

Medical and pharmacy directors from health plans all over the country gathered at the Cambridge Healthcare Summit on February 25-27, 2004, to formulate solutions to problems currently facing the industry.

Based on a working group analysis at the summit, this article examines issues surrounding patient self-management from the perspectives of both the patient and health plans and identifies approaches that will satisfy all the stakeholders.

Patient self-management in the healthcare environment entails consumer empowerment and engagement. It encourages patients to take an active role in choosing treatments and other healthcare strategies and balancing the potential benefits of those strategies against their costs. But healthcare choices are complex, and even health professionals often disagree about the best way to manage limited resources.

As some responsibility shifts directly to members and patients, how can health plans juggle member and employer satisfaction while at the same time maintaining a successful and sustainable business? Member self-management may be one tool that will allow a more rational use of limited healthcare resources, and let patients and employers be more interactive with their health plans.


Healthcare costs are rising despite the implementation of traditional tools, such as utilization review and benefit design. Employers are particularly concerned about costs, as well as employee satisfaction and productivity. All stakeholders want to achieve value-answering the question of what healthcare services genuinely improve health, and how the costs of these services are justified-but if health professionals cannot easily answer those questions, it remains unclear whether members can do any better. How can health plans help?

Consumer Reports

Industry Lacks Objective Benchmarks . A lack of benchmarks for quality and value undoubtedly contributes to the confusion among consumers, employers, and even providers about the value and quality of healthcare. No publication similar to exists in the healthcare industry. The industry has no market mechanism to determine the value of new technology or a method to compare it with an old technology. Clinical trials usually are set up to compare new drugs with placebo not other drugs. This makes it difficult for the health plans, employees, and consumers to distinguish which are the safest and most cost-effective products on the market.

Given the constellation of problems arising from a lack of understanding of the value and quality of healthcare (Table 1), the medical and pharmacy directors proposed what they would consider to be an ideal situation for the health plans to strive for:

Healthcare costs are perceived as affordable

Consumers are happy with their healthcare coverage

Consumers understand the value/quality of healthcare (eg, from provider to laboratory,

pharmacy, hospital, etc)

Affordability . Many factors drive rising costs, such as innovation in drugs, technology, and equipment. New indications for drugs and new formulations lead to greater utilization. New diseases require new therapies. Guidelines for blood pressure and lipid control recommend lower levels for intervention, making more people eligible for treatment and adding to the treatment costs. As patients survive acute conditions, such as heart attacks or congenital anomalies, they may become long-term users of the healthcare system. These are just a few of the factors that contribute to the rising costs of healthcare. Physicians are a factor also.

Physicians need to be educated about the appropriate use of new drugs and technology. Not every new drug or technology is better than the existing ones. Conversely, they also need information about those innovations that are substantially better, and in which situation they should be utilized.

Underutilization of drugs by physicians can also lead to higher costs. Not prescribing an antihypertensive drug or nonadherence can result in a stroke that could have been prevented. Better blood pressure drugs with fewer side effects do not help patients if they are not taken or prescribed. The same reasoning applies to new technologies.

Another way physicians contribute to rising costs is they make money based on the volume of work they do, but there are no incentives for performance or costeffectiveness. Some physicians also incur more expense by ordering unnecessary tests for patients to protect themselves from lawsuits.

Patients increase costs as well by failing to take advantage of various ways to control their healthcare costs. Only 30% of patients who are eligible actually have flexible spending accounts in order to purchase health services at a discount. Patients have no economic incentive for volume purchases of drugs to treat chronic conditions, which might facilitate drug adherence. An incentive, such as a discount for every fourth prescription, could possibly help. In addition, patients see healthcare utilization as their right: "I paid for it, so I'm going to use it however I want to" is a common attitude.

Finally, bureaucracy adds to the costs. Legislation mandating benefits- often a reaction to limits on services or just political pandering- is a factor. Paperwork also contributes to the cost. Today's complex, multi-layered system of regulation, legislation, grievance and appeal processes, lack of unified medical records, deficiencies in doctor— doctor communication, and other bureaucracy have complicated an already complex problem.

Consumer Empowerment Requires Education . Consumer empowerment cannot happen without a good understanding of disease states and treatment options. Providers certainly do not have the time to educate patients up to a level sufficient for complex decision making. Patients themselves accept different levels of responsibility for their healthcare. Some patients are content to leave all decisions to the physician, whereas others want a full explanation so they may participate in a fully informed way.

For consumer empowerment to succeed, patients have to be willing to take more responsibility for their healthcare needs.


Benchmarking for Patient Empowerment . If patients are expected to make informed decisions about healthcare, including providers, diagnostics, and treatments, they need credible information as a basis for their decisions. For years, people have had comparative information about buying large and small consumer goods. Cars have government mileage ratings, reviews in auto magazines, listed prices, and test drives. Consumers are able to judge cost, quality, and problems. However, very few people question their physicians about the quality of the radiology or physical therapy facility to which they are referred. If they did, there would probably be scant data for the physician to give them.

Providing comparative pricing models could help consumers make decisions based on factors such as outcomes, access, convenience, and cost. For example, patients may find it useful to see costs and outcomes if they choose to get a particular procedure done at inpatient facility A that has performed 100 of these procedures or if they go to outpatient clinic B which has done only 20. There are websites that have been established that are starting to offer these services to patients. 1,2

Consumer Reports

Another solution to this need is a type of benchmarking tool that would measure cost and quality, and determine value. The same or a similar report card possibly with continuing education credit attached, could target providers. The Food and Drug Administration could enhance the tools by collecting data on new drugs, therapeutic classes, and technologies, and compare them with existing ones. Some key metrics on outcomes may already be available within Medicare databases.

Information on drugs should include the different copay levels but also summaries of outcome studies to show their relative efficacy, safety, and tolerability. This information has begun to be available on the Internet in a limited format but more needs to be done. 3

Copays may even be tied to drug effectiveness. More effective drugs, or cheaper drugs with equivalent effectiveness, may have lower copays (such as generics now). The consultants also proposed that all health plans adopt an "actual selling price" model similar to Medicare's system for drug reimbursement to lead toward healthcare as an affordable investment at the employee level.

Computer "wizards" may be useful at many levels where consumers have to make buying decisions: comparing and purchasing health coverage, choosing providers and facilities, and comparing the values of different therapies, including procedures and drugs. In such a multifactorial arena, patients may rate factors (eg, cost, quality, access, and convenience) according to their own preferences, and the computer will rank the available choices. A similar system may be practicable for employers, as well, to choose health plans for their employees.


Cost . The medical and pharmacy directors felt that consumer dissatisfaction stems in part from a lack of understanding of the value of healthcare. They are upset about cost, access, and quality (Table 2). Cost may become less of a sticking point if consumers understand the value of their healthcare coverage. To demonstrate value, health plans may need to develop educational materials and information sources and to coordinate with other interested parties, including health advocacy groups, public health agencies, and pharmaceutical companies, to establish tools along these lines. Web-based and print materials may be appropriate vehicles.

Creating flexibility in plan design will assist individual choice. A 30-year-old employee starting a family probably needs a plan very different from a 60-year-old employee who is planning to retire. Websites that allow patients to build their own plans are beginning to appear on the Internet. 4

Access . Access applies not only to healthcare services but to information as well. "Transparency" should be improved, meaning that consumers should have data on what pharmaceuticals, diagnostics, and services actually cost the health plans to provide. Current thinking is that if patients know the costs, they can better understand why they are charged the prices they are and how they are getting value for their healthcare premiums and copays.

Patient understanding and decision- making autonomy may help mitigate dissatisfaction. If patients have control over their decisions, they may better "own" the choices they make.

Quality . Establishing benchmarks can empower patients to make better decisions to produce better outcomes. Laying out the criteria for judging quality can also help them understand what constitutes quality care and why it has value. Very specific models showing return on investment (ROI), such as at the disease level, can demonstrate quality. ROI may encompass health outcomes, quality of life, productivity, and economic benefits. Such a demonstration should carry weight with both consumers and employers.

Incentive programs may promote quality improvement among patients and providers. Healthy lifestyle programs already reward members. Physicians could be provided incentives, for example, if they meet certain practice standards, such as achieving a desirable glycosylated hemoglobin level in the majority of their patients with diabetes. Already, General Electric, Ford, and United Parcel Service are participating in such programs for their employees with diabetes. In these programs, physicians receive reimbursement incentives and patients benefit through rewards programs (as well as better health) for improved adherence.

In conclusion, the medical and pharmacy directors felt that perceptions about healthcare need to be influenced so consumers and employers see it as a valued investment rather than as an expense that is out of control. Besides the programs they outlined, they also saw a role for good public relations. Perceptions of value and affordability will drive customer relations, and good public relations will, in turn, positively influence these perceptions. They suggested more outreach about the positive aspects of modern healthcare, especially to counter much of the negative publicity about poor quality and the public's perception of poor value.

Although good public relations and public outreach can influence perceptions of quality, ultimately the most direct way to improve perceptions of quality is to improve quality itself. The panel said that health plans need to learn from their mistakes, constantly reassess themselves, institute changes when indicated, and let the public know what quality improvements they have made.

Bioterrorism: What Role Will Health Plans Play?

In 2001, the United States experienced its first bioterrorism attack. Although the anthrax attack was on a small scale, it highlighted concerns among public health and government officials regarding the vulnerability of the United States. Up to that point, the government had been concentrating on preparing for more conventional terrorist warfare. Since then, government and public health agencies have been scrambling to develop plans to protect the United States from the threat of bioterrorism and handle a potential attack.


Bioterrorism is defined as the intentional release of potentially deadly bacteria, viruses, or toxins into the air, food, or water supply. 1 Some of the biologic agents that could be utilized are anthrax, plague, botulism, and smallpox. It has been estimated that the economic impact of a bioterrorist attack could range from $477.7 million per 100,000 persons exposed to brucellosis to $26.2 billion per 100,000 persons exposed to anthrax. 2 Unlike a chemical or bomb attack, bioterrorism may not be readily apparent, as the attack may start out small and then gradually gather momentum as the infection spreads through the population (Figure). By the time physicians or public health officials realize there is a problem, thousands of people could be infected.

While fire fighters, police, and first aid workers would be the first line of defense for a conventional attack, physicians and hospital workers will be on the frontline of defense in a bioterrorism attack. They will be in the position of diagnosing rare and unusual diseases, most of which they have never seen and will have difficulty recognizing. Other challenges they will face are distinguishing the infected from the uninfected, finding places to quarantine the sick, rationing scarce resources (eg, a lack of hospital beds, healthcare staff), and protecting themselves from infection. 3 Despite these challenges, the roles of the physicians and hospitals are pretty clear cut, but what role will the health plans play?


Syndromic Surveillance . The key to containing a bioterrorism attack is early recognition before it spreads too far into the general population. The Centers for Disease Control and Prevention (CDC) has made the development of a system that could detect an early outbreak of a disease one of its top priorities. One of the first places the infected will turn to is their physician. If all the symptoms of various patients could be collected and analyzed, it is likely that an outbreak of a disease would be spotted more quickly. Because virtually all the physicians and hospitals in this country are members of a health plan, one important role that the health plans can play is to collect and analyze this information.

The CDC is working with America's Health Insurance Plans (AHIP), Harvard Medical School, Harvard Pilgrim Health Care/Harvard Vanguard Medical Associates in Massachusetts, Health Partners in Minnesota, Kaiser Permanente Colorado, Scott and White Healthcare System in Texas, the Austin Regional Clinic and Austin Diagnostic Clinic in Texas, and Optum to launch a national bioterrorism syndromic surveillance demonstration program. This program is designed to collect, analyze, and report real-time data on designated syndromes, such as respiratory and gastrointestinal illnesses. The system covers more than 20 million individuals in all 50 states.

"No disease surveillance program can prevent bioterrorism," said Katherine Yih, PhD, Department of Ambulatory Care and Prevention, Harvard Medical School, Boston, and one of the coordinators of the program. "The hope is that our system can detect releases of bioterrorism agents early, allowing early public health intervention."

This surveillance program collects data on patient visits and telephone calls in ambulatory care settings. Each night, computer programs at the participating health plans extract the diagnostic codes from the previous 24 hours that correspond to syndromes of interest. For example, a code for cough corresponds to respiratory syndrome. The number of cases of each syndrome is aggregated by the zip code of residence. This aggregate information is sent to a data center where statistical modeling allows unusual clusters of illness to be identified. When a cluster is detected, an alert can be sent to the health department. Each health plan has one or more designated clinicians who can be contacted by the public health department in case more information on individual cases is needed. 4,5

"The number of organizations needed to provide good alerting in a community is unknown, but it's likely that it isn't necessary to cover all individuals in a community," said Dr Yih. "The major criteria for participation are same-day availability of diagnoses in electronic form together with demographic and residence data, plus willingness/ availability of the health plans or practices to respond rapidly to a health department query."

Some of the advantages of this system are that the source population is known; it utilizes electronic information already collected by practices, health plans, and call centers so additional clinical labor is not needed to implement the surveillance; and because the information is available electronically, the extra cost to extract the data and send it to the public health agencies will be minimal. 4 Health plans will also be able to protect their patients' privacy as aggregate numbers of cases are sent. This allows potential outbreaks of disease to be spotted without violating any individual's right to privacy.

At this time, the program is still being tested. "We can say that the pilot program has been successful in that it does detect statistically unusual clusters of illness," said Dr Yih. "Whether or not it can or will detect outbreaks of importance to public health is still being evaluated."

One of the possible limitations of this new and untested system is that false positives could hinder the detection of bioterrorism. A decision will have to be made about what constitutes an acceptable rate of false positives.

"Health insurance plans are becoming an integral part of an emerging early warning system that could identify the initial stages of a bioterrorism attack," said Karen Ignagni, president and CEO, AHIP. "By providing real-time data on clusters of symptoms and illnesses, health insurance plans may help public health officials identify disease outbreaks before their occurrence is detected through a flood of emergency room visits or hospitalizations."

Demonstration on Bioterrorism Preparedness . Having a syndromic surveillance system is one way that health plans can contribute to the war on bioterrorism, but there are more practical considerations as well. The CDC is sponsoring another program initiated in Kansas City a year ago entitled "Demonstration on Bioterrorism Preparedness." A consortium of managed healthcare professionals, local and state public health officials, members from the CDC, and representatives from the larger employers in Kansas City are examining what the significant issues of a bioterrorist attack are and developing a template on how to deal with them.

"If we wait until we've recognized an outbreak," said Blake Williamson, MD, vice president and medical director at Blue Cross and Blue Shield of Kansas City, and a member of the pilot program, "we're not going to be as efficient or as effective in dealing with it and we're going to have more casualties." The planning that needs to occur for a bioterrorism event is also applicable to the outbreak of a community-wide infectious disease such as severe acute respiratory syndrome. He described some of the issues the group feels that the health plans will be facing in the event of an attack or other outbreak and what they should be planning for.

Business continuity - What do you do with your employees? How do you protect them? Do you send them home or keep them at work? In the case of an attack, how would you keep the business running? Some employees may get sick-what are the contingency plans in this case? These issues are similar to any business continuity planning.

Responsibilities as an insurer - How do you communicate with your members and physicians? How do you get the right information out to the members ensuring that it is not conflicting with public health agencies or the media? What can you do to assist in controlling the spread of the agent, and do you need to do anything different to manage an actual case?

Good citizen - How do we as a health plan be a good citizen for the community? Health plans have unique business strengths. They have communication infrastructure with physicians and members already in place. They have access to health data that public health agencies need to monitor information on illnesses in the community. They have clinical staff that might assist in meeting community medical needs in a crisis (eg, mass prophylaxis).

The most important step health plans should take is to establish links with the local public health agency. Because there will be a lot of panic and disruption if there is a bioterrorist event, it is vital to know local public health people in advance. And vice versa, public health agencies need to know who to call within the health plan. Designated people within the organization should be appointed as the contacts who will have the answers the public health agencies need. "If there is a breakout," Dr Williamson said, "it's not the time to be handing out business cards."

Members will be calling with questions and, therefore, the health plan will need to give them appropriate information. The Kansas City project is already scripting messages that can be delivered by the health plans' customer service departments in the event of an attack. The messages provided by the health plans must be consistent with those of the media and public health agencies to eliminate any potential confusion in an already panicked public.

The health plans may also need to consider their benefit structure. The key to containing bioterrorism is preventing its spread, but health plans are in the business of treating disease. During an attack, a health plan may have to be unconventional. Would quarantine be covered? How would it be covered? Should home healthcare be sent in? What would happen if a motel had to be changed to a hospital? What if the drug used to treat the disease is not on the health plan's formulary or has copays that many people cannot afford? Could the health plan accommodate public health officials by allowing certain kinds of tests to be performed at a laboratory that is not in the health plan's network? These are just a few of the questions that should be answered before a bioterrorist attack.

Health plans may also have to deal with a whole new set of government rules. The CDC asked the Center for Law and Public's Health at Georgetown University and John Hopkins University to draft a model state emergency health powers act for states to use as a resource in implementing a state emergency in case of an attack. As of 2002, 34 states had introduced and adopted measures based on this model act (Sidebar). These rules include the agencies being allowed to seize control of hospitals and facilities, mandate examinations and treatments, and rationing medical supplies.

"Because there are so many different scenarios, it's hard to plan for each one," Dr Williamson said. "I think it is important to have a communication link with public health. Our stance as a health plan is that we're going to do whatever it takes to work with the community and make sure we do a good job at meeting whatever challenge comes up."

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