Healthy Transitions: Information technology can and should play a key role in improving continuity of care for patients with cancer

Contemporary treatment of primary cancer may involve surgical resection, single- or multiple-agent chemotherapy, radiation, hormonal, or targeted biologic therapy. Secondary management may include treatment of or assistance with nausea/emesis, pain, anemia, depression, disability, impaired communication, and other issues. The complexity of this process means that it will be filled with transitions. Patients will receive care from multiple providers, in multiple locations. Active treatment will give way to follow-up care, which in turn will yield to extended “survivorship” management. If improperly handled, each of these hand-offs can be problematic, confusing or worrying the patient and compromising the ability of providers to deliver optimal care. Managing these transitions can be diffi cult, requiring as it does that an enormous amount of information about each patient and his or her disease be shared quickly and accurately among many providers. If only there were a tool, let’s say a vast network of computers on which this data could be stored and accessed from multiple points of entry, to ease the process...

Continuity begins with a definition

There are hundreds of definitions of “continuity of care,” but we like the one proposed by Haggerty, et al. best: “for patients and families the experience of continuity is the perception that providers know what has happened before, that different providers agree on a management plan, and that a provider who knows them will care for them in the future.” Haggerty and colleagues suggested three types of continuity; in the same year, John Saultz, MD, introduced two more (see Table). The experience of a patient with cancer may be divided into two phases: the period of time during which active treatment is provided, and the “survivorship” period, during which therapy has been completed and/or cancer is controlled, but follow-up care continues. Th ese phases are not always distinct, may overlap, and may even alternate. Eff orts at ensuring any of the types of continuity described above must take into account both phases.

In-treatment continuity

Continuity of care is important during active treatment. A cancer diagnosis is confusing and frightening, and the treatments administered may produce adverse reactions that exacerbate symptoms related to progression of disease. Lack of continuity may make patients feel insecure—“my doctors can’t agree on how to help me; maybe none of them know what they’re doing”—and less likely to adhere to their treatment plans. It also introduces any number of other potential problems. To understand how, consider the standard treatment workfl ow for a patient with cancer. A patient will arrive on the day of treatment and undergo testing and physical examination. During this time, the oncologist will conduct an assessment of any adverse events encountered since the last session. Th e oncologist will then issue an order for the treatment agent(s). The patient will then move to a treatment room, where a nurse administers therapy prepared by a pharmacist and documents treatment to be reviewed by the oncologist at a later date. Th e patient is discharged. Before the next session, the patient may visit his or her primary care physician (PCP) and/or the hospital for emergent complaints.

Now, consider the opportunities for error inherent in this system, if information and management planning do not combine to make a continuous care experience. The oncologist may make prescribing errors or be unaware of drug—drug interactions (especially if the patient was prescribed a new drug by his/her PCP and forgets to inform the oncologist). Chemotherapy-related toxicity that occurs and is managed between treatment sessions may not be reported to the oncologist. The nurse administering therapy may not have access to important patient-specifi c notes that aff ect the administration.

These issues come into even more stark relief during times of emergency. Hurricane Katrina displaced thousands of people, many of whom were cancer patients receiving active treatment. Some patients presented to hospitals with only the most basic information about their cancer—“I get chemo for breast cancer, but I don’t remember the name. Stage? I can’t remember.”—and limited information on allergies, treatment history, and the like.

Survivor continuity

According to the Institute of Medicine (IOM) report Lost in Transition: From Cancer Patient to Cancer Survivor, more than 10 million Americans have a history of cancer (and are therefore defined as “cancer survivors”). Issues associated with continuity of care deepen considerably during the post-treatment period. During active treatment, the regimented nature of the treatment workflow prevents the most egregious continuity problems. In 1985, physician and cancer survivor Fitzhugh Mullan defined three “seasons of survival.” The first “season,” the acute phase, begins with diagnosis and involves dealing with treatment. During this period, said Mullan, “simply coping with the effects of the therapies occupies all the adaptive energies of most patients.” After the fi rst course of therapy, or remission, patients will enter what Mullan termed the extended and eventually permanent seasons of survival. During this period, patients will deal with follow-up and maintenance therapy.

They may want to go back to work; have to deal with limited mobility, communication, or cognition; return to regular visits with their PCP; or experience feelings of depression and anxiety for which they seek help. The degree of difficulty involved in maintaining continuity of care is considerable. This is especially true given that most oncologists have little formal training in survivor care. Moreover, PCPs—and other providers—may not be conversant with the intricate details of a patient’s cancer and have little ability to communicate directly with the oncologist. Finally, there is no definitive “best practice” for the care of cancer survivors, meaning that continuity will necessarily suffer as different practitioners operate according to their own preferences.

The IOM defines four essential components of survivor care:

1. Prevention of cancer recurrence
2. Surveillance against metastasis, recurrence, or adverse effects of disease and treatment
3. Intervention for any adverse effects, including physical symptoms, psychological distress, and for problems with insurance and employment
4. Coordination among all providers, including mental health professionals, PCPs, oncologists, and support staff

Overcoming the obstacles described so far to achieve eff ective continuity in the survivorship period will require a new paradigm. What we will do and what we have done Of the types of continuity described in the table, informational continuity feeds most of the others. With access to the right information, diff erent providers can provide logical care specifi c to the needs of the patient (management continuity) and his or her family (familial continuity), regardless of location (geographic continuity). At heart, informational continuity is a simple record, which defi nes what we will do and what we have done.

The IOM and ASCO recommend the creation of treatment and survivorship plans, developed in advance with feedback from the patient. A treatment plan would summarize all elements of treatment to be administered, including information on cancer stage and type. A survivorship plan would address timing of recommended followup, recommendations for healthy lifestyle and prevention of recurrence, information on employment and insurance issues, and information on the availability of psychosocial services as needed. Plans of this type would encourage patient involvement in the treatment process and prompt the patient to ask any questions at a time when the questions and answers could be documented and examined by future providers, thus ensuring that answers are consistent, or at least that changed answers can be clearly explained.

On the other end of the process, a treatment summary describing treatments administered, any adverse events, allergies, patient preferences, and follow-up and maintenance care, would allow future providers to obtain a comprehensive picture of everything a given patient has experienced. The National Coalition for Cancer Survivorship conducted a workshop in which patients, oncologists, and PCPs were shown a treatment summary like the one described above. Patients considered the summary valuable; PCPs agreed, to the point that they would preferentially refer patients to an oncologist who provided such a summary. Oncologists were, understandably, worried about the time investment required to generate a summary.

All the same, the momentum behind a push to generate treatment plans and summaries for every oncology patient is growing. The Comprehensive Cancer Care Improvement Act, currently under consideration as HR. 1078 and in the Senate as S. 2790, is designed to support care that combines treatment with symptom management. Key among the provisions of this bill would be the proposal that cancer survivors completing treatment be given a thorough treatment summary and follow-up plan; the bill would authorize Medicare reimbursement for oncologists for the preparation of such a plan.

EHR to the rescue

The easiest and most eff ective way to generate a truly comprehensive treatment summary is through an EHR that automatically generates the summary in real time as new information is added to the record. At an ASCO roundtable convened January 23—24 in Washington, DC, thought leaders representing practicing oncologists, EHR vendors, advocates, and others described the key elements of an ideal oncology EHR, deciding that it should include the ability to store:

• A detailed treatment plan, including information on diagnosis, performance status, goals of therapy, and expected toxicities
• Dynamic generation of a treatment summary, including information on dose reductions, reason for discontinuation, and treatment-emergent adverse events
• The ability to create a chemotherapy workflow sheet
• Alerts for drug interactions and dosing safety

The American Society for Testing and Materials has developed a core set of data that would be sent to each provider to whom a patient is referred. This standard (called the Continuity of Care Record) includes a treatment summary developed according to the guidelines outlined above, to be easily generated via an EHR. For more on the Continuity of Care Record, including a list of EHR vendors working toward compatibility with this standard, visit the American Academy of Family Practice’s Center for Health IT.

Of course, as with most matters related to EHRs, there are challenges. Funding to support widespread incorporation will have to be obtained; provider workflow will need to be re-engineered to allow for more comprehensive entry of data into an EHR. By far the most signifi cant issue, however, is the subject of interoperability. At present, there are hundreds of EHR vendors; the ability of these disparate products to communicate with one another is variable. According to Center for Health IT Senior Advisor David C. Kibbe, MD, without the ability to share data, “each doctor’s offi ce or clinic is simply an island of data without the means of accessing or exchanging the stored patient information it contains.” Interoperable systems in this context are systems that can electronically exchange treatment summary information among different caregivers (potentially using disparate EHRs or practice management systems).

Interoperability is a significant enough subject to warrant an article of its own, but very broadly speaking eff orts at interoperability are directed toward two goals:

1. “Plug-and-Play” — function eff ectively along with other systems even if those other systems are created by different manufacturers.
2. Extensibility — technology that can potentially be used in a variety of ways.

Solving these problems may take a large investment of time and money, but could ultimately save nearly $80 billion a year, according to HIMSS.

Frank Ferrara is a freelance healthcare journalist and a former Oncology Net Guide editor.