Unlocking the Power of Patient-Reported Outcome Measures (PROMs)

How do patients choose their doctors? This is the million-dollar question asked and explored by health systems’ executive teams and communication departments across the country. And, the answer might be different depending on who is being asked. Do patients use publicly available quality metrics, shop websites and articles, use their own personal healthcare network or PCP, ask friends and family, or use their insurance provider’s list? While these are the main choices available to consumers, each of these avenues is flawed in its own way.

One example is the personal vignette of a woman who was diagnosed with an aggressive form of breast cancer. Her friend, a cancer surgeon in a different state, vetted her available options with his oncology network. The surgeon recommended a physician with excellent outcomes, but the woman hated the physician’s bedside manner and ended up choosing a different doctor with much lower surgical outcomes than the recommended physician. If even surgeons can’t get patients–including friends and family–to the right providers, how can patients be expected to find the right provider and care for their needs? Patient-reported outcomes are the missing link in empowering patients and helping to define good outcomes.

Patient-Related Outcomes as the Outcome Metric of Relevance

Patient-Reported Outcomes (PROs) are defined by theNational Quality Forumas “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else.” Most healthcare organizations consistently measure things like mortality rates, length of stay (LOS), readmissions, lab values, or other process measures. As clinicians and health systems seek to provide better care, they will only succeed if they can accurately define what qualifies as a good outcome.

卫生系统试图衡量越来越多的临床指标，但这些指标往往忽略了什么对患者重要。例如，很少有医生被病人问及他们的30天死亡率是多少。经常被忽视的是影响患者生活质量的问题。病人关心的事情是，“如果我切除前列腺，我会失禁吗?”或者“我能去接我的孙子吗?”患者关心症状、日常活动、功能状态和心理健康。所有这些都是卫生系统难以衡量的，这就是患者报告结果衡量(PROMs)的作用。PROMs通过捕捉患者关心的生活质量问题，并经常导致他们首先寻求治疗，从而提供了定义良好结果所缺失的一环。

A great example that highlights the importance of patient-reported outcome measures is extracted from aMichael Porter Harvard Business School Case Reviewlooking at urology surgery outcomes. When comparing two hospitals, one thought to be average, one considered to be one of the best in the country, there’s very little difference in mortality, particularly with prostate cancer. Looking at the five-year mortality outcomes in Figure 1, the results are nearly identical between the two institutions. However, the second two measures show rates of incontinence and impotence, and there’s a marked difference between the two.

As a patient, of primary importance is “Am I going to live,” but the second question is, “What is my life going to be like?” This is where someoutcome measuresare much more important to a patient’s quality of life. If a patient knows there is a 50 percent chance of becoming incontinent or a 75 percent chance of impotence when undergoing surgery for prostate cancer, this will affect his decision-making process. Even though both institutions can keep patients alive, it’s the best center that employed techniques that have helped patients maintain a high quality of life and retain dignity and relationships. Even though these measures aren’t reported in traditional healthcare metrics, they are sometimes the ones that matter most to patients.

Rather than using variation by provider or mortality to discover value, health systems can use patient-reported outcomes like incontinence after prostatectomy as a metric for quality improvedent. An important thing to keep in mind about variation, especially in surgery is to be very thoughtful about case mix and know that each patient is not necessarily comparable to another. Physicians and surgeons should not be penalized for taking care of patients with greater comorbidities or with lower pre-op scores. When a health system plots and compares outcomes of faculty, looking for the lowest incontinence scores, they should consider the case mix, surgical technique, and any other extenuating factors to help manage and position the data with care. The goal is to identify best practices and drive system-wide quality improvement.

Patient-Reported Outcome Measures as a Guide for Appropriateness and Efficiency

PROs can also help surface and guide appropriateness and efficiency efforts. Many different techniques used in the OR and they’re all attributed to very different costs. When looking at a measurement like physical function after different types of reconstruction, the data shows that the three main ways of reconstructing a hip are associated with very different costs. The most expensive surgery actually had the lowestPROMIS physical function所以请记住，最昂贵的治疗不一定是最好的。

Patient-Reported Outcome Measures Leads to Better Shared Decision-Making

When it comes to cancer surgery, sometimes the options available to patients are incredibly morbid and they’re faced with terrible choices where they trade off mortality versus morbidity. Patient-reported outcome measures can serve as a valuable tool by telling patients the experience of those who have gone before them.

另一个很好的例子是椎板切除术。Data showsthat whatever level of leg pain patients present with is going to be cut in half. If a patient wants to know how he’s going to recover from his laminectomy, he can look at the PROMs data and see that immediately after surgery, most patients have almost no leg pain, but around the three-month mark, some of that pain starts to creep back in. Now the patient has that expectation and doesn’t need to call the physician’s office wondering what happened. This is a key factor in appropriately setting patient expectations and guiding decision-making in terms of whether or not the patient feels the benefit is high enough to justify the surgery.

Effect of Patient-Reported Outcome Measures on Providers

PROMs can even be helpful from the standpoint of office flow and mitigating phone calls about patient concerns that perhaps something went wrong with their surgery. This is important to note when thinking about getting already-overwhelmed providers to do “one more thing.”

As health systems progress toward improving care, reducing costs, and empowering patients, it can be difficult to know how to push past the landscape of “I can’t do one more thing” when it comes to clinician buy-in. Providers are being asked to do more and more with less and less. There are more regulations, a lot of which don’t make sense from a clinical perspective, and many providers are frustrated.

尽管患者报告的结果测量似乎是一个障碍，但额外的数据可以节省卫生系统和提供者的时间，并使更深入的了解和更个性化的护理。例如，提供者可以看到患者的医疗记录中的最后两个疼痛评分，这是使用图2中的一个示例患者展示的。

使用上面图2中的示例患者，黄色突出显示的分数超出了范围，并且是异常的。当这位患者最初就诊时，她有多个领域都令人担忧，包括疼痛、身体功能、疼痛对她日常生活的干扰，以及全球健康(指她每天的情况)。在这2个月的时间内，患者的各项指标均在正常范围内。当很多医生觉得他们收到了很多负面反馈，很难量化他们做得有多好时，这种来自专业人士的反馈对医生和病人来说都是非常有益的。

Patient-Reported Outcome Measures for Value Demonstration and Transparency

PROs的主要好处之一可能是向患者展示价值和透明度。Partners Healthcare has created a forward-facing website calledCare Decisions，使PROs的数据公之于众。该网站分享有关心脏病、膝关节疼痛/关节炎、椎管狭窄和前列腺护理的数据，有助于指导患者做出决定。

Implementing Patient-Reported Outcome Measures

As healthcare organizations begin to explore the power of PROMs, they start seeing the value in many areas, including improving personalized care, shared-decision making, quality improvement, appropriateness and efficiency, and transparency. The next question is how to actually implement PROMs. Effective implementation requires a series of specific steps to ensure success:

1. 领导的支持。使用其他系统的例子来帮助向主管和部门领导推销这个想法是有帮助的。
2. Form team functions charged with implementation, technology,data,and advanced analytics.
3. Choose a technology platform.
4. 决定收集方式并使IT工作良好。
5. Pick an initial target.
6. Implementation and data analysis. Which one comes first?

是先开始实现还是先开始分析是一个经典的“先有鸡还是先有蛋”的问题。为使数据显示相关性，卫生系统需要实施PROMs。为了实施PROMs，临床医生通常需要关于它为什么重要的数据。需要记住的一件事是，当医生没有得到PROMs的数据时，该程序可能会完全停止，特别是当它查看提供者之间的差异时。关键是从小处开始，找一个对程序有信心的人，然后通过及时将他们的数据反馈给那个人来奖励这种信心。

实施的另一个关键是就衡量患者报告的结果达成一致。很少有例外，当被问及超过30个问题时，患者就会停止参与。Other tips for successful implementation include:

• Agree on which PROs to measure and set clear criteria. For example, Criteria: Short, relevant to clinical care, validated, industry-standard, covered by PROMIS domain.
• 技术平台必须无缝工作，世界杯厄瓜多尔vs塞内加尔波胆预测包括患者门户、Wi-Fi、平板电脑、安全、数据集成、实时处理。
• Beware of common ongoing challenges such as: risk stratification, data for non-surgical treatment, patient-facing reports, and sharing data with clinicians.

Why Patient-Reported Outcomes Are the Missing Link

PROs are the outcome metric of relevance for many conditions treated. They are the missing link in defining a good outcome by capturing quality-of-life issues that are often the reason patients seek treatment. The results often vary considerably among treatment options, providers, and facilities, providing patients with more decision-making power geared toward the things they care about most. Making patient-reported outcomes a focus of care also gives providers power to improve patient care and the health of populations.

Additional Reading

1. The Secret to Patient Compliance: An Application of The Four Tendencies Framework
2. Unleashing Patient’s Power in Improving Health and Care
3. 高质量的数据对关注患者参与度的医生至关重要
4. Health Equity: Why it Matters and How to Achieve it