Written Testimony on the Role for Consumers in Electronic Prescribing

National Committee on Vital & Health Statistics

Subcommittee on Standards & Security

July 28, 2004

Alison Rein, MS Assistant Director, Food & Health Policy

National Consumers League

Good morning. My name is Alison Rein, and I am the Assistant Director of Food and Health Policy for the National Consumers League. I am here today to share with you some of the ongoing efforts underway at NCL, and to provide a patient-oriented perspective on electronic prescribing. I will begin my comments with an overview of NCL and the SOS Rx coalition, and its current activities in the electronic health domain.

Overview of the National Consumers League

The National Consumers League is a private, nonprofit advocacy group that uses education, research, advocacy, investigation, publications, and public/private collaboration to accomplish its mission of representing consumer interests on marketplace and workplace issues. Formed in 1899, we are the nation's oldest consumer organization, committed to protecting, representing, and advancing the economic, social, and health interests of consumers.

For over 100 years, NCL has provided government, businesses, and other organizations with the consumer's perspective on social concerns including child labor, privacy, food safety, and healthcare. A natural extension of this mission is our recent initiation of the SOS Rx Coalition.

The SOS Rx Coalition

SOS Rx is a collaborative coalition dedicated to promoting outpatient medication safety, initially among seniors. Convened in 2003 by the National Consumers League with support from Express Scripts as founding sponsor, the purpose of the Coalition is to make the outpatient use of medicines safer. To ensure that the work of the Coalition drives real change in the health care system, our voice is national and our actions evidence-based.

The Coalition is represented by more than 60 organizations from a broad spectrum of the health care field, including patient and consumer groups, academic research institutions, government, payors, providers, pharmacists, pharmacy benefits managers, employers, and pharmaceutical companies.

SOS Rx has chosen to focus on initiatives aimed at promoting consumer actions and system changes that enhance the safe outpatient use of medications. From the outset, the Coalition considered how best its members could contribute to the dialogue without replicating efforts already underway. Furthermore, the Coalition did not wish to serve as or be perceived as a standards setting organization. Rather, Coalition members expressed a strong desire to educate patients and then harness the force of an empowered consumer to advance broader health systems change.

The Patient Safety Rationale

I know that this audience is well aware of the current limitations in our health care system. It is economically inefficient, administratively burdensome and complicated, and too often yields unwanted clinical outcomes.

We have many data points to suggest that some action must be taken to improve upon the status quo. Adverse drug events occur in 5-18% of ambulatory patients each year, and preventable medication errors cost an estimated $2B/year in the US. And, while electronic prescribing initiatives have demonstrated significant gains in patient safety, communications, and overall efficiency, only 10%-16% of US physicians use some form of electronic prescribing.

Recognizing the need to consider the patient perspective in any solution, the SOS Rx Coalition has embarked upon four projects that either directly or indirectly empower patients to affect change.

Ongoing SOS Rx Initiatives

Of the four projects currently underway, two warrant specific mention in this forum given their relevance to the issue of electronic prescribing and the potential it has – as part of a broader health care paradigm shift – to improve patient safety.

One ongoing effort of the SOS Rx Coalition is the development and promotion of a standard personal medication record template that could be used by patients to record and track all medication use. This would include prescription drugs, over-the-counter drugs, vitamins, and herbal supplements taken regularly or sporadically. The guiding principle behind this effort is summarized as follows:

Consumers should have a role in ensuring that a complete, accurate, and updated list of medications and supplements is available to all of their medical care providers so as to maximize therapeutic benefit and minimize the risk of adverse events.

The specific technologies required to make this happen are not the subject of this Coalition effort. We realize that technology ranges from paper forms, to cards, electronic records, web portals, and beyond; they are merely the enablers. Our focus is on the role of the patient in making sure this specific outcome of an accurate medication list is achieved – on a broad scale and in the near term. 

Although the personal medication list would ideally be implemented as part of a broader personal health record, the Coalition recognizes that incremental steps are needed. The fact that many patients interact with numerous prescribing physicians, and receive medications from a variety of sources, speaks to the urgent need to establish a hub for this information. To this end, the Coalition has developed a paper-based template that will be reviewed and tested on patients, and eventually disseminated widely as part of an aggressive campaign.

The other relevant project that has been undertaken by the Coalition involves a two-tiered effort to accelerate the adoption of Eprescribing. An initial phase of research and discussion has yielded a definition and accompanying set of guiding principles that can be used to establish a baseline standard for Eprescribing that is patient-oriented.

As has been suggested in the report of the eHEALTH Initiative, electronic prescribing is broadly defined as any system that uses a computer to assist in creating a prescription. This definition can encompass several options, ranging from basic clinical decision support to a vastly preferred, fully integrated electronic health record. The Initiative further specified – and the Coalition supports the notion - that any definition must meet additional requirements, including:

· Rapid adoption of implementable and usable computerized prescribing technologies,

· The ability to work in a variety of practice settings with a variety of existing IT infrastructure,

· Encouragement of rapid development and adoption of standards to allow choice of systems and use of common services,

· Encouragement in the creation and application of appropriate incentives and education, and

· Preservation of the patient-physician relationship and choice in the delivery of health care

As this project develops further, the Coalition will consider additional patient-focused criteria that must be met by any normative definition of electronic prescribing. An initial, but not comprehensive, list includes:

• Support of safe care,
• Use of nationally adopted technology standards,
• Compliance with best practices,
• Patient access to educational and reference materials,
• Patient access to a complete medication regimen,
• Enhanced communications (e.g., renewal requests and compliance reminders),
• Portability across all systems regardless of provider, pharmacist, or insurer, and
• Maintenance of patient privacy and trust

Given the task of this committee, we ask that you also acknowledge the critical nature of workflow standards - as well as technology and data standards – in determining the uptake and successful use of any electronic prescribing system. If we truly want to empower consumers, then we will need to create a system that is highly attuned to their needs, and that does NOT create tension between patients and providers. For example, if patients are going to be encouraged to promote eprescribing, then we will want to ensure that the following needs are addressed:

· The patient must be able to instruct their provider to transmit a prescription to any pharmacy they choose, regardless of which vendor created the system. Anything less will result in more work for the physician and less satisfaction for the patient.

· Any eprescribing capability must make it possible for the interested patient to review her medication list and update it before any electronic prescription transaction occurs. This ensures that patient efforts to maintain an accurate list are not undermined by implementation of the eprescribing system. The same information should be available to the physician and, in both cases, should be accessible by PDA, cell phone, PC, or some other medium.

· Any eprescribing system must enable patients to self report minor and major adverse drug reactions – as defined by standards. Physicians also should be able to incorporate this information into the patient’s medication record.

· And finally, any decision support rules must be able to distinguish between information submitted by patients versus providers.

These suggestions do not represent a comprehensive list, but rather highlight the need for any workable system to incorporate patient needs and preferences into its design.

Many of these needs and preferences may be revealed in the second phase of the effort, which involves collaborating with the eHEALTH Initiative. Working together, the groups plan to identify patient “touch points” in the continuum of care that are affected by the prescribing process, and chronicle the benefits that can accrue to patients through use of eprescribing. Having gone through this exercise, the group will recommend strategies for communicating these benefits to patients as part of a broad campaign.

However, before embarking on a patient education campaign that “sells” patients on the benefits of electronic prescribing, the SOS Rx Coalition believes that it is critical to take a step back and consider a broader problem. That is, we need to address the current consumer “demand vacuum” that stems from the public’s perception that there is no problem with the status quo. Many Americans may be generally aware that there are flaws in the current health care system, and some even have personal encounters that undermine their faith in that system, but most do not fully appreciate how frequently medication errors seriously affect patient health.

One proxy for consumer awareness is the extent to which an issue is covered in the popular print media. Those in this room likely have read numerous reports and peer-review publications outlining the potential benefits of eprescribing, but how many patients have even heard the term, let alone have the knowledge base to provide a rudimentary definition or describe how it might benefit them? To demonstrate this, the SOS Rx Coalition commissioned a content analysis of eprescribing media coverage in consumer publications between October 1, 2003 and July 20, 2004. In total, fewer than 20 stories covered the topic, and most of these were business journals oriented to industry analysts – not general consumers.

Obviously, much needs to be done to educate patients about this issue. In implementing it’s campaign, the Coalition plans to develop messages that will help patients understand both the risks inherent in the current system, and the potential safety benefits that could accrue with the adoption of electronic prescribing. Of critical importance, however, is the notion that we do not want to do this in such a way that scares patients into inaction. Rather we hope to provide support to patients by integrating use of a tool - the personal medication record. If patients feel educated and empowered with a tool– immediately at their disposal – to improve their safety, then it is more likely that they will have a positive response to the campaign.

In addition, it is the Coalition’s hope that, through adoption of this tool, patients will not only have taken steps to improve their own safety, but also will have compelled their providers of care to recognize – at the personal, patient level - the benefits of e prescribing. In taking this approach, the Coalition has re-directed lobbying tactics for achieving electronic prescribing. Instead of focusing efforts solely on physicians (through incentives, education, etc…) the focus is turned to the patient. As more and more patients learn about the flaws of the current system and the incredible benefits of eprescribing, more and more physicians will be compelled to consider adoption of such technologies.

Issues to Consider in Moving the Campaign Forward

Despite the promise for improved patient safety that this campaign may yield, the Coalition acknowledges that several issues will need to be considered as it moves forward. To maximize the success of the campaign, we will need to:

• Identify and segment appropriate patient targets,
• Conduct further research to gain a better understanding of patient perspectives (an evaluation of current understanding, as well as wants and needs for an eprescribing system)
• Convert the eprescribing concept and information into a language that people understand, and
• Partner with other private and public entities to broaden dissemination of the campaign messages

Ultimately, the National Consumers League and the SOS Rx Coalition believe that, through a dual process of educating patients and providing them with useful and appropriate tools, it is the patients who will have the greatest influence in promoting the rapid adoption of electronic prescribing. It is with this consumer focus that we hope to drive electronic prescribing standards development.