Cuidados de saúde baseados em valor não são mais apenas um modelo teórico-é um movimento real que começa a transformar a maneira como os cuidados de saúde são gerenciados. Pagadores, hospitais e médicos em todo o mundo estão cada vez mais medindo e relatando resultados dos pacientes para melhorar os cuidados. Os principais players-incluindo o Medicare e o Medicaid nos EUA, o Serviço Nacional de Saúde no Reino Unido, o Instituto Nacional de Saúde na Holanda e vários hospitais universitários europeus líderes-todos fizeram grandes avanços nessa área. Poucas métricas convencionais refletem os resultados do mundo real de um paciente: consequências imediatas do tratamento, o processo de recuperação, o estado de espírito e o retorno à boa saúde. Por meio de nosso trabalho com pagadores e fornecedores em todo o mundo, desenvolvemos um conjunto de princípios para ajudar médicos e líderes a medir os resultados que realmente importam para os pacientes.
As more payers and providers make value-based health care a central part of their management models, they face the challenge of defining and selecting the right outcomes to measure and report. Few conventional metrics reflect a patient’s real-world outcomes: immediate treatment consequences, the recovery process, state of mind, and the return to good health. Through our work with payers and providers globally, we developed a set of principles to help clinicians and leaders measure the outcomes that really matter to patients.
Defining Outcomes
In his pioneering article, “What Is Value in Health Care?,” Michael E. Porter highlights the importance of outcomes measurement as a critical element of Reforma da saúde . Porter define os resultados como "os resultados do atendimento em termos de saúde dos pacientes ao longo do tempo". Com base nessa estrutura, Ichom, uma organização sem fins lucrativos, definiu resultados como "os resultados que as pessoas se preocupam com a maioria ao procurar tratamento, incluindo melhorias funcionais e a capacidade de viver vidas normais e produtivas". A organização definiu e publicou 12 padrões globais para medição de resultados até agora. Desenvolvido pelos principais médicos, líderes do registro e pacientes em todo o mundo, as métricas de Ichom para as principais condições médicas se concentram nos resultados que são importantes para os pacientes. Essa mentalidade é fundamental ao desenvolver um forte conjunto de métricas. Mas para entender como um tratamento afeta a qualidade de vida de um paciente, os médicos precisam perguntar: "Você está se sentindo ansioso ou esperançoso? Você está dormindo, comendo, exercitando? Você pode fazer as coisas que gosta?" Mas quase 95 % dos pacientes sobrevivem nos primeiros cinco anos após o diagnóstico, portanto, problemas de qualidade de vida-como complicações da cirurgia, dor, incontinência e disfunção sexual-também devem ser levados em consideração. Se um tumor é pequeno e o paciente tem idade avançada, a escolha certa pode ser a vigilância ativa - ou seja, não removendo o tumor, mas rastreando de perto sua progressão. Nesse cenário, a ansiedade do paciente em viver com câncer não tratado é uma métrica crítica. Essas experiências destacam os resultados que podem e devem ser medidos.
We agree with ICHOM’s definition and believe that outcomes must put patients at the center, focusing on what they experience while coping with a health condition. This mind-set is critical when developing a strong set of metrics.
For example, health care teams are currently trained to focus on whether a treatment is effective. But to understand how a treatment impacts a patient’s quality of life, physicians need to ask, “Are you feeling anxious or hopeful? Are you sleeping, eating, exercising? Can you do the things you enjoy?”
More specifically, for a patient with prostate cancer, for instance, the immediate outcomes that matter may be overall survival and progression to metastasis. But nearly 95 percent of patients survive the first five years after diagnosis, so quality-of-life issues—such as complications from surgery, pain, incontinence, and sexual dysfunction—must also be taken into account. If a tumor is small, and the patient is of advanced age, the right choice may be active surveillance—that is, not removing the tumor but tracking its progression closely. In this scenario, the patient’s anxiety about living with untreated cancer is a critical metric. These experiences highlight outcomes that can and should be measured.
Most Conventional Metrics Do Not Measure Outcomes That Matter to Patients
We can measure many things as we try to understand the quality and efficiency of health care, but very few conventional metrics currently tracked by providers reflect actual Resultados de Saúde . (Ver Anexo 1.) Por esse motivo, é importante distinguir entre medidas convencionais e os resultados importantes para os pacientes. As medidas convencionais incluem o seguinte:
- Condições iniciais do paciente. Eles informam os ajustes dos tratamentos e são críticos ao comparar resultados em diferentes instituições. Quando as coortes dos pacientes são comparadas, a linha de base reflete as diferenças na mistura de pacientes e deve ser usada para ajustar os resultados com base no risco. Embora essas métricas possam destacar áreas de fraqueza ou risco relativo, elas normalmente não refletem os resultados do paciente. Essas medidas de processo podem ser usadas para monitorar a adesão às diretrizes clínicas e ajudar a esclarecer como diferentes métodos levam a diferentes resultados - alguns melhores que outros. No entanto, o foco apenas em otimizar o processo mede afasta a atenção do que é realmente importante para um paciente e pode desencorajar a inovação ou a adoção de novos métodos que podem beneficiar os pacientes e melhorar os resultados. Os Prems avaliam a experiência de um paciente com certos aspectos de seus cuidados, incluindo a atitude da equipe clínica, a qualidade da comida do hospital, os tempos de espera e a limpeza. Essas pesquisas podem ser úteis para impulsionar melhorias na experiência do paciente. A patient’s initial baseline—such as age, comorbidities, and other risk factors (for example, use of medications or substance abuse)—are essential to the individual’s medical history. They inform adjustments of treatments and are critical when comparing outcomes across different institutions. When patient cohorts are compared, the baseline reflects differences in patient mix and should be used to adjust outcomes on the basis of risk.
- Structure. Providers may also track structural metrics, such as staff-to-patient ratio, staff competencies, and the state of providers’ facilities. While these metrics may highlight areas of relative weakness or risk, they typically do not reflect patient outcomes.
- Processes. Providers commonly track treatment protocols, such as time of biopsy, time to diagnosis, surgical technique used, radiation treatment settings, medication administered, and so forth. These process measurements can be used to monitor adherence to clinical guidelines and help shed light on how different methods lead to different outcomes—some better than others. Yet focusing solely on optimizing process measures shifts attention away from what is really important to a patient and can discourage innovation or the adoption of new methods that could benefit patients and improve outcomes.
- Patient Experience. Hospitals are rightly concerned about patient satisfaction with care, and many use patient-reported experience measures (PREMs) to evaluate satisfaction. PREMs assess a patient’s experience with certain aspects of his or her care, including the attitude of clinical staff, quality of hospital food, waiting times, and cleanliness. These surveys may be useful to drive improvements in the patient experience.
- Indicadores de saúde. Para muitas condições, pode ser difícil medir os resultados de curto prazo. Os indicadores conhecidos por prever resultados podem, portanto, ser muito importantes. Para um paciente com câncer de próstata localizado, por exemplo, o provedor pode medir a margem cirúrgica, o antígeno específico da próstata (um marcador de tumor bioquímico) e o escore de Gleason (um sistema de classificação de tumores para câncer de próstata). Essas métricas são indicadores importantes de saúde e podem ajudar a prever os resultados que são importantes para os pacientes, mas na maioria dos casos eles não são um substituto suficiente para os resultados. Correlacionados com os resultados, eles garantem um conjunto poderoso e equilibrado de métricas. Mas é importante reconhecer que, quando usado isoladamente, sem um foco adequado nos resultados, essas métricas podem ser enganosas e impedir que as equipes clínicas e de gerenciamento se concentrem no que realmente importa para os pacientes. matéria para pacientes. (Consulte “Teste sua capacidade: quais medidas você escolheria?”) Por esse motivo, desenvolvemos o seguinte conjunto de diretrizes para facilitar o processo de selecionar métricas de resultados. Por esse motivo, reunimos um breve exercício que testará suas habilidades e inspirará mais reflexão sobre como definir resultados. Todas as medidas sugeridas se relacionam com o câncer de próstata e podem ser significativas para medir, mas nem todas as medidas refletem os resultados centrados no paciente. Independentemente de como sua condição é tratada (como com intervenção coronariana percutânea, cirurgia de desvio ou produtos farmacêuticos). Nos cuidados de saúde baseados em valor, é fundamental comparar os resultados de diferentes equipes clínicas, em vez dos resultados de diferentes procedimentos, embora este último possa fornecer uma explicação importante para as diferenças nos resultados alcançados. Por exemplo, os registros de doenças que se concentram em um procedimento específico e comparam os resultados entre os centros tiveram um papel muito importante na melhoria da artroplastia do quadril e do joelho, fornecendo informações críticas sobre os implantes mais eficazes e as técnicas cirúrgicas. No entanto, os dados que comparam procedimentos variados não podem responder à pergunta mais ampla sobre o tratamento ideal para a doença subjacente da osteoartrite. Ambas as perspectivas são valiosas, mas medir os resultados baseados na condição médica desafiarão o paradigma atual de tratamento e permitirão mudanças inovadoras na prática clínica. Também é importante garantir que as medidas rastreem toda a gama de prestadores de cuidados, incluindo cuidados primários, cuidados especializados e reabilitação. Isso garante que o insight seja obtido na gama completa de resultados para um grupo de pacientes e que as diferenças nos resultados de saúde causadas por variações na configuração de sistemas de saúde ou vias de atendimento possam ser avaliadas. Por exemplo, medidas do processo clínico-como o número de admissões, a duração da estadia e as intervenções-geralmente não importam tanto para os pacientes quanto medidas de qualidade de vida, capacidade funcional e bem-estar emocional. O Anexo 2 demonstra a extensão dessa incompatibilidade para pacientes com câncer de mama. As principais preocupações para os pacientes com câncer de mama estão preocupadas com o futuro, sendo cansadas e o seguro de saúde ou as preocupações com dinheiro.
All of these conventional metrics play an important role in health care: they provide vital data and, when strongly correlated with outcomes, they ensure a powerful and balanced set of metrics. But it is important to recognize that when used in isolation, without an adequate focus on outcomes, such metrics can be misleading and prevent management and clinical teams from focusing on what really matters to patients.
Principles for Selecting the Right Outcomes Metrics
Payers and providers accustomed to process metrics may find it challenging to shift gears and identify the outcomes that matter to patients. (See “Test Your Ability: Which Measures Would You Choose?”) For this reason, we have developed the following set of guidelines to facilitate the process of selecting outcomes metrics.
TEST YOUR ABILITY WHICH MEASURES WOULD YOU CHOOSE?
Choosing the outcomes that matter to patients can be challenging. For this reason, we have put together a brief exercise that will test your skills and inspire further reflection on how to define outcomes.
From the list of metrics offered in the exhibit below, select five that you believe should be used as outcomes metrics for patients with localized prostate cancer. All suggested measures relate to prostate cancer and could be meaningful to measure, but not all measures reflect patient-centered outcomes.
(Answers can be found at the end of the exhibit.)
Measure outcomes for well-defined populations. Outcomes should be measured for all patients within a well-defined population segment (such as those with coronary artery disease) regardless of how their condition is treated (such as with percutaneous coronary intervention, bypass surgery, or pharmaceuticals). In value-based health care, it is fundamental to compare the outcomes of different clinical teams rather than the outcomes of different procedures, although the latter may ultimately provide an important explanation for differences in the results achieved. For example, disease registries that focus on a particular procedure and compare outcomes across centers have played a very important role in improving hip and knee arthroplasty, providing critical insights into the most effective implants and surgical techniques. However, data that compares varying procedures cannot answer the broader question about the optimal treatment for the underlying disease of osteoarthritis. Both perspectives are valuable, but measuring outcomes based on the medical condition will challenge the current treatment paradigm and enable innovative changes in clinical practice.
Measure outcomes across the full cycle of care. Metrics should track every stage of a patient’s journey, including prevention, diagnosis, treatment, recovery, follow-up, and long-term well-being. It is also important to make sure that measurements track the full range of care providers, including primary care, specialized care, and rehabilitation. This ensures that insight is gained into the complete range of outcomes for a patient group and that differences in health outcomes caused by variations in the configuration of health systems or care pathways can be assessed.
Define outcomes based on what matters most to patients. There can be a stark difference between what providers and registries measure and what patients actually care about. For example, measures of the clinical process—such as the number of admissions, length of stay, and interventions—often do not matter as much to patients as do measures of quality of life, functional ability, and emotional well-being. Exhibit 2 demonstrates the extent of this mismatch for breast cancer patients. The primary concerns for breast cancer patients are worrying about the future, being tired, and health insurance or money worries.
Direct reports by patients on the status of their own health can help determine whether treatment culminates in outcomes that patients care about. For this purpose, many providers rely upon patient-reported outcomes measures (PROMs). The Martini-Klinik, in Hamburg, Germany, uses Web surveys to follow up on clinical outcomes for prostate cancer treatment; response rates are typically above 80 percent. Because PROMs capture a patient’s personal, unfiltered assessment, with limited demand on the clinician’s time (and untainted by the clinician’s influence or interpretation), these tools provide a useful complement to clinical measurements and assessments.
Patients’ perspectives are critical when defining outcomes. By including patients, several leading organizations have established targeted, patient-centered outcomes metrics for specific diseases. All 12 outcomes standard sets published by ICHOM, for example, have been developed by working groups that include patient representatives. Some hospitals, too, have conferred with patients when defining outcomes metrics. For instance, in a working group for bipolar disorder at the Sahlgrenska University Hospital, in Gothenburg, Sweden, a patient suggested that self-sufficiency was a significant desired outcome. Bipolar disorder is often linked to damaged relationships, poor job or school performance, and even suicide. But when correctly treated, patients living with this illness can lead full and productive lives. By measuring self-sufficiency as an outcome, physicians in Sweden can evaluate how well patients are coping with the disease and whether they need additional support.
Choose measures that are already standardized and included in registries before working to create new metrics when possible. The more comparable the outcomes data among providers, the more useful they are. Physicians in Australia, Sweden, the U.S., and other countries are using comprehensive outcomes data collected in national disease registries to identify outliers and improve average outcomes. Indeed, ICHOM plans to expand its current 12 metrics to cover more than 50 conditions by 2017, representing approximately 70 percent of the disease burden in industrialized countries. These standard sets can—and should—be leveraged by providers and payers. By selecting standardized outcomes metrics, health care systems can compare outcomes and variations in medical practice within a hospital or across provider networks regionally, nationally, and internationally. With standardized metrics, providers have a broader base for identifying best practices. We therefore recommend that organizations begin by reviewing existing standards and then, if needed, complement them with additional metrics that the providers want to follow (because of, for example, a specific local research or development effort).
Prioritize the most important outcomes—and avoid selecting too many. It is important to prioritize and select the metrics that will have the biggest impact, because requiring clinical teams to track too many of them will burden the teams with an overly complex data-collection process, which could lead to limited compliance and poor-quality reporting. We recommend selecting seven to ten metrics for analysis per patient group. Of course, additional metrics can be tracked to further analyze and understand the results, but they should not be prioritized for steering.
In general, select measures that can be tracked easily, but do not choose convenience over relevance. When starting out, it may make sense to select certain outcomes measures that can be tracked easily to gain traction with systematic monitoring and analysis. But working toward the goal of tracking the most relevant measures is important, even if it requires more effort.
Once outcomes measures have been selected, make sure to avoid any ambiguity in the implementation. The team must define in advance the exact patient group that will be included in the measures, which tools will be used (such as doctor-reported data, electronic medical records, PROMs, and registries), how data will be collected, who will report the data, and when the data will be gathered, analyzed, and reported. Defining all of these factors up front removes ambiguity during implementation and increases the likelihood that comparative analysis will yield high-quality data.
Coletando os princípios em prática
A seleção das medidas corretas de resultados deve ser um processo cuidadosamente planejado para o qual as principais partes interessadas dedicam tempo e atenção. Quando bem feitos, os resultados medem e a transparência podem aumentar o valor da assistência médica e permitir que os prestadores e sistemas de saúde atendam melhor aos pacientes por meio de melhora contínua. Um processo mal projetado leva a métricas inadequadas, que podem prejudicar os esforços, distorcer resultados e desativar os profissionais médicos. Provedores - desde todas as principais especialidades e funções ao longo do caminho de atendimento para um grupo de pacientes selecionados para garantir que todas as vozes sejam ouvidas. Controladores e especialistas em sistemas de dados devem ser contratados para compartilhar conhecimentos sobre as melhores maneiras de extrair e analisar os dados e ajudar a gerenciar as novas demandas das equipes clínicas.
We recommend the following steps and considerations to successfully put these principles into practice:
- Establish a cross-disciplinary team. Involve representatives—including nurses, primary care physicians, surgeons, and other providers—from all key specialties and functions along the care pathway for a selected patient group to ensure that all voices are heard. Controllers and data system specialists should be brought on board to share expertise regarding the best ways to extract and analyze the data and help manage the new demands on clinical teams.
- envolver pacientes na definição de métricas. Eles também podem ajudar a selecionar e testar ferramentas de baile. Os pacientes criam uma dinâmica positiva e mantêm grupos de trabalho focados nos resultados que são importantes durante o tratamento, recuperação e a longo prazo. Patients can ensure that outcomes measures address what really matters to them. They can also help select and test PROM tools. Patients create a positive dynamic and keep working groups focused on the outcomes that matter during treatment, recovery, and over the long term.
- Colete uma lista abrangente de métricas disponíveis. Grupo de pacientes que estão sendo medidos. Review the existing international standard sets (such as those developed by ICHOM), national standards (disease registries recognized by leading experts), and any metrics already being used by patient groups for different conditions, because they may be applicable to the patient group that is being measured.
- Revise pesquisas e publicações recentes. Pesquisa para priorizar as métricas que mais importam para os pacientes. Recomendamos um conjunto principal que está totalmente alinhado com os padrões internacionais, complementados por algumas medidas específicas da instituição. Se os pagadores e os fornecedores medirem os resultados com base nessas necessidades humanas essenciais, serão feitos progressos significativos nas áreas que mais afetam profundamente os pacientes e suas famílias. Identificar e medir os resultados certos requer trabalho, mas as melhorias significativas já estão surgindo como resultado do rastreamento dos resultados que são importantes para os pacientes. Arne Köhler Conduct a review of the literature to understand the importance of various measures and to identify any innovative metrics or measurement techniques.
- Prioritize the most important metrics. After creating a comprehensive list of measures, use the team’s expertise and the latest research to prioritize the metrics that matter most to patients. We recommend a core set that is fully aligned with international standards, complemented by a few institution-specific measures.
Nearly all patients seek the same health-care outcomes: to be self-sufficient, symptom free, and capable of pursuing the activities that give them a sense of satisfaction without interference by their medical condition. If payers and providers measure outcomes based on these essential human needs, significant progress will be made in the areas that most deeply affect patients and their families. Identifying and measuring the right outcomes requires work, but meaningful improvements are already emerging as a result of tracking the outcomes that matter to patients.
