The ‘Teachable Moments’ of Healthcare: What can you Learn from your Patient?

Abhinav Shashank
Wed 28 November 2018

“Outcomes, by and large, remain the ultimate validators of the effectiveness and quality of medical care.”

  • Avedis Donabedian

Much has been said, written, and heard about the importance of enriching the patient experience in a value-based system. Unsurprisingly, the outcome-driven world of healthcare is full of examples where improving the overall well-being or reducing the burden of disease has proven to be equally important as eliminating the symptom altogether.

Many notable research documents have long advocated the cause of putting patients’ opinions firmly at the top of the clinical decision-making process. Patient Reported Outcomes (PROs), in particular, have been extensively and aggressively promoted by some of the best minds and organizations. With reimbursement procedures increasingly becoming value-driven and margins getting impacted by patient experience, the significance of PROs is growing at an unprecedented speed.

Why do organizations need to reevaluate the way they deliver care?

A survey conducted by NEJM Catalyst pointed out 4 major challenges hindering the way of improving patient health outcomes as depicted in the graph:

Source: Patient Engagement Survey: Improved Engagement Leads to Better Outcomes, but Better Tools Are Needed, NEJM Catalyst

Interestingly, most respondents blamed the lack of right strategies to prevent diseases and ineffective patient engagement as the significant challenges faced by organizations. However, such issues often get neglected due to the unavailability of reliable data regarding their criticality when it comes to improving the care quality. Eventually, most organizations end up imparting care by keeping the disease above the patient. In the long run, it paves the way for an episodic care-based system and pushes healthcare away from delivering preventive care.

Patient Reported Outcomes (PROs) and why are they important?

Patient Reported Outcomes (PROs) are defined as reports or symptoms which are conveyed directly by the patient without being interpreted by the caregiver or any other healthcare professional. They include measures such as symptoms, Health-Related Quality of Life (HRQoL), satisfaction from care received, among others.

Along with saving lives, healthcare organizations across the world also strive for making the lives of their patients healthier and happier. In this context, PROs can be considered as an ideal way of evaluating and including patient preferences in their care journeys.

Several symptoms, ranging from the amount of pain incurred by a patient during surgery to the amount of congestion felt by a patient suffering from cold, can only be described by patients themselves. Clinicians have to rely on asking patients how they feel since many symptoms are best known to patients and vary drastically from person to person.

Patient Reported Outcomes Measures (PROMs) quantify symptoms into numeric scores through validated questionnaires. Such scores have great significance as organizations can use them to compare various treatment procedures and find the difference in outcomes achieved through, say, surgical and non-surgical methods.

How can organizations measure PROs in the right manner?

To ensure maximum accuracy, care teams need to first identify the right means to capture PRO data, define the objectivity or the goal of the measurement, and the domains that they wish to measure.

Source: FDA Guidance for Industry: Patient-Reported Outcome Measures

For instance, if an organization wish to measure the HRQoL, they will first need to create an apt questionnaire and define the timeline between which the respondent would be asked to answer those questions. Secondly, they will need to create categories they intent upon including in the questionnaire such as physical or social status. Ultimately, they need to ask specific questions like for how many days during the past 30 days was the physical health of the respondent not good, if the respondent is feeling depressed, et al.

A sample question for CDC HRQOL–14 “Healthy Days Measure”; Source: Centers for Disease Control and Prevention (CDC)

By using the right PRO tools, organizations can also measure physical functions, symptoms, global standards of health, social and psychological well-being, cognitive functioning, personal constructs, care satisfaction, adherence to medical regimens, and clinical trial outcomes, among many others.

The 5-fold benefits of leveraging PROs

  • Developing personalized care plans

Tailoring a treatment based on individual preferences as well as how their body reacts to medication and other care processes is an excellent way of imparting care which is truly patient-centric. For instance, PROs related to HRQoL include multiple domains that may aid the care teams in creating a treatment plan most suitable for a patient.

Source: Patient-reported outcomes: A new era in clinical research, ResearchGate

In a recent survey, 49% of healthcare executives agreed that enhancing the patient experience is one of the top priorities of their organizations. To strike a balance between patient preferences and clinical wisdom, care teams need to know what factors affect patients drastically and whether they can compensate for them. With the right information regarding patient preferences, care teams can modify their care strategies to suit the needs of their patients.

  • Making more informed decisions

Medicine works on the principle of understanding the disease first and then making the right interventions. The first clue regarding the disease is generally given by the patient themselves based on their interaction with the provider. Based on the severity of the issue, the provider orders specific medical tests and ask the patient to take certain medicines and procedures. The cycle continues the next time as well when the patient revisits their doctor. However, many details might get lost in translation during the course of the care procedure.

Source: Using patient-reported outcome measures for improved decision-making in patients with gastrointestinal cancer – the last clinical frontier in surgical oncology, Frontier

Medicine, as the saying goes, is both a science and an art, where ‘art’ is often the intuitive decision-making capabilities of the provider under circumstances that might demand delicacy and acute attention to details.  With a quantifiable value associated with patient experience at their disposal, care teams can not only understand the pain-points better but also curate treatment strategies based on evidence and conclusive details.

  • Improving population health dynamics

Many factors determine the quality of population health within a region, most notably, access to healthcare facilities, social environment, physical environment, genetics, and individual behavior. For ensuring a healthier population, organizations need to ensure that all such factors are taken care of in an effective manner.

Source: What Is Population Health, University of Wisconsin Department of Population Health Sciences and Robert Wood Johnson Foundation

Population health across a region may or may not vary substantially. However, having the data to asses the health outcomes can prove significant while evaluating the reliability and validity of care procedures.

  • Engaging patients comprehensively

54% of the healthcare professionals, including executive leaders and clinicians, believe that shared-decision can prove to a vital cog in increasing patient engagement. However, to enable such an approach, providers need to know what patients think and make of their treatment procedures. Being considerate of the views and concerns of patients is also associated with patient satisfaction rates. To put it in monetary terms, organizations can gain or lose up to 2% of their final reimbursements based on patient satisfaction scores.

Studying PROs and making sure that both providers and patients stay on the same page throughout the care journey can have a positive impact on how providers look at the problem. With calls for transforming from disease-focused system to patient-focused system only getting louder, PROs can work as a sure-shot strategy to make the shift happen quicker.

  • Making self-assessment and yearly reviewing process stronger

To ensure the highest level of care delivery, organizations need to evaluate their performance from time to time. Notably, such assessment processes should have specific goals, strategies, and measurement methods backed by concrete evidence.

The human angle of care can never be neglected, and in fact, is one of the most important facets of our care delivery system. PROs contain details about patient experience, their overall health, things they liked and hated about their treatment procedures, among other things. Based on such findings, organizations can evaluate what works best for their patients, what works best for their care teams, and how can they optimize their care and financial outcomes.

How can organizations ensure that the data they have is relevant?

While PROs do feel like the solution of most of the problems associated with patient experience, they’d be of little use if the data collected through such reports are not relevant or updated. Further, the data collected should be format-agnostic so that it can be seamlessly clubbed with clinical data for evaluations and comparisons.

In the age of intelligence, information sharing should be a real-time and effortless process. For PROs to truly revolutionize the care delivery process, the following mechanism should be followed:

  • PROM data is shared with the caregivers assigned to the patients.
  • The caregivers identify the key areas of concern and potential improvement.
  • Every caregiver is entitled to have their views on the data so as to identify the best practices to enhance the patient experience.
  • Based on a team-based approach, a personalized care plan is created to target the patient’s key pain-points.
  • The data is securely forwarded for further iterations to identify population trends.
  • The organization identifies the areas of improvement that it needs to focus on and direct staff members to take relevant measures.

Source: Patient reported outcomes why are they important, Keith Meadows, Founder and CEO Health Outcomes Insights Formerly DHP Research & Consultancy Ltd, SlideShare

Two key takeaways from the process mentioned above are:

  1. The data should be regularly fed back so that the improvement process follows continuous cycles.
  2. The data should be accurate, precise, and near real-time to aid the process of decision-making.

To make the most of their PRO reports, healthcare organizations should create a centralized data repository for relevant stakeholders to pull out and study that data as per their requirements. Further, they should also have a cutting-edge analytics model in place so that the care teams can focus only on analyzing them, rather than identifying the data they need their immediate attention, long-time attention, or short-time attention.

The road ahead

How well a physician is able to diagnose a patient determines how the patient responds to the treatment. The more equipped a physician is with the relevant information, the better they can strategize the treatment procedure. With emerging technologies such as the Internet of Things and Machine Learning taking healthcare by storm, its only time that these technologies are utilized to harness the power of data such as PROs.

As we move forward, a future of endless possibilities awaits us- a world where patients know about their health more than ever before and providers spend most of their time in enabling preventive and evidence-based care measures. Treating the disease should no more be the only goal of care teams. It’s about improving the HRQoL, and PROs might well be the perfect arsenal we need to win this battle!


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