Patient Reported Outcomes (PROs) for Improved Engagement

In order to bring you new and important insights about engaging your people, we want to address the relevance and importance of patient/participant generated outcomes—also known as “patient reported outcomes (PROs).” 


In this 3-part article series we will discuss: 

  1. The key components of an effective and efficient PROs program, 
  2. how it benefits your patients/participants, and 
  3. why it's necessary for your organization’s success. 


What are patient/participant generated outcomes? 

According to the Office of the National Coordinator for Health Information Technology,“Patient-generated health data (PGHD) are health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.”(1) 

Patient Reported Outcomes or PROMs “assess health status and health-related quality of life from the patient/service user perspective.”(2). Patient-reported outcomes (PROs) are defined as “any report of the status of a patient’s (or person’s) health condition, health behavior, or experience with healthcare that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else.”(3) Participant generated data supplements existing clinical data, fills gaps in information, and provides a more comprehensive picture of ongoing health and recovery wellbeing for participants. Participant generated and subjective data is valid and an important source of information relevant to guiding and personalizing care and services. 

As our partner, David Whitesock says, “The self-reported experience is the best way to understand how people assess the quality and possibility of their life and well-being. The recovery journey—like well-being—is personal. There is only one person that can tell whether their recovery is good and it is that one person.” (4)

In the first installment of this 3-part series on participant reported outcomes, we’re taking a closer look at the four key components essential for creating an effective patient/participant generated outcomes program.


The Four Key Components

Readiness - Develop a strategy and educate staff

Receptiveness - Educate patients and families 

Infrastructure - Define your measures and system for collecting the data

Improve - Review and use the data to personalize care and improve processes 


#1: Readiness

Develop a strategy and educate your staff. This is critical to the success of your program. In addiction treatment and behavioral health, it is not unusual for a pushback to come within your organization. 

Some team members may be resistant to the idea of gathering and using “patient reported” data that signify outcomes or “success experience.” For example, they may question its accuracy or veracity. Some may perceive the activity as “extra work” that adds little value to the therapeutic process or ultimate outcomes. Some may simply struggle with seeing a participant’s perspective as a valid source of data for clinical or service decision making let alone how it might actually support a motivational approach to care. So education for your team is important. Leveraging the team’s default mode to “help”, equipping them with new and evidence based knowledge, clearly articulating processes, and providing a reliable feedback loop is likely going to help achieve buy-in from staff.


#2: Receptiveness

Educate your participants/patients and family. This is also essential.  Most patients/participants in traditional healthcare are open to following set expectations for care and follow up. This may seem contrary to our traditional perspective about an SUD/MH population as “resistant and manipulative.” 

In the mental health and addiction space, we often operate under the belief that patients are inherently resistant but most want to get well and feel better. The assumption that patients are resistant by default is a self-defeating one. All patients or family members are motivated for something. Our work is to find out what motivates our participants. Or in other cases, we have an acute care mentality and see an episode of care as self-contained requiring little if any chronic care management. Letting patients and families know that a long term approach is your “standard of care” is empowering and gives patients and families a set of expectations to which they can adjust their commitments and behaviors.  


#3: Infrastructure

For some organizations, a more simple infrastructure for handling the data makes sense. Others may need increased capabilities to keep up with the amount of data collected. That’s why it’s important to first know what you want to measure, selecting how you will measure, then you can find an efficient way to collect the data and define roles and responsibilities to build your infrastructure. An often cited problem is patient/participant willingness to engage in completing outcomes assessment measures.  

When it comes to selecting measures, we highly recommend the Recovery Capital Index (RCI). The RCI represents one of the most accepted, standard measures of recovery wellbeing and risk. It is scientifically validated, strengths-based, comprehensive, multidimensional, and person-centered. The RCI Supports measurement based care and longitudinal outcomes while supporting all recovery pathways and is approved by The Joint Commission.  As it relates to addressing the challenge of engagement and low completion rates, a solution that is easy and trusted by patients seems to get the best results.  Text based messaging is simple, trusted and a technology already used by almost all patients.  


#4: Improve

Improving your processes and applying the results to personalize your patients’ care is key. Many organizations can check the box on “collecting the data” but fall short on using it to actually improve the experience and value to patients because it requires additional efforts.  This includes systematically reviewing and analyzing the data and applying insights from this analysis to the process of personalizing care and improving your care processes systematically. Expertise can come from within your organization or be purchased as part of a service layer alongside the infrastructure partner you might select.  


The major differences between patient/participant generated outcomes and data vs the provider-led status quo:

  1. Patients/participants, not providers, are primarily responsible for capturing or recording these data. 
  2. Patients decide how to share or distribute these data to providers and others, rather than providers deciding for them.
  3. Patients/participants have greater access to information that is inherently valuable to their goals and health improvement. 

Data used in the right circumstances can be motivational, especially in situations when behavioral change is an important part of the holistic approach to improvement outcomes within the context of chronic care management. (5) Please be on the lookout for more in this series of patient/participant reported outcomes and the value of the RCI. In subsequent articles we will talk about the benefits to patients/participants and the value accrued to your organization.



  2. Drug Alcohol Depend. 2016 Aug 1; 165: 159–167
  3. National Quality Forum, Patient reported outcomes (PROs) in performance measurement [Internet]. Washington (DC) : NQF ; 2013 Jan 10 [cited 2016 Feb 8
  4. Beyond Sobriety eBook
  5. HEALTH AFFAIRS VOL. 35, NO. 4: PATIENTS’ & CONSUMERS’ USE OF EVIDENCE: “Incorporating Patient-Reported Outcomes Into Health Care To Engage Patients And Enhance Care”

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