# Presentation: 917415

## Using Fair Process to Cross the Quality and Healthcare Chasm:

**Eliciting the Perspective of Traumatic Brain Injury Survivors**

**Laura S. Lorenz, MA, MEd, PhD Candidate**
**Schneider Institutes for Health Policy**
**The Heller School for Social Policy and Management,**
**Brandeis University**

## Background

- TBI is a serious public health problem in the U.S.
- 1.4 million new injuries diagnosed each year
- 80,000 to 90,000 new long-term disabilities
- IOM Report calls for providing patient-centered care that reflects patients’ preferences and expressed needs
- TBI can affect cognitive functioning, self-esteem, and  perception of self
- These consequences pose challenges to including the TBI survivor’s perspective

**Notes:**
TBI is a serious public health problem in the U.S.
TBI has been called the silent epidemic. More recently, with between 20 and 80 percent of Iraq war veterans coming home with this injury, TBI is silent no more! 
Providing patient-centered care is a key recommendation of the IOM’s Quality Chasm report. Yet, given the cognitive and emotional impacts of TBI, there are challenges to understanding the survivor’s values, preferences, and expressed needs and incorporating them into quality improvement efforts.

## Predicting Organizational Behavior

**(March & Simon 1958)**

**Notes:**
This organizational behavior model, March & Simon’s classic book Organizations, involves taking a complex model of reality and simplifying it in order to apply problem-solving processes. 
This model predicts that division of labor causes organizational sub units to consider only some of the information that could be important in helping them reach goals.
Narrowing the focus of information leads to a differentiation, or splintering of subgoals. 
Together time pressure and these splintered subgoals cause organizations to narrow their focus of attention. 
This model is a good snapshot of what happens in the rehabilitation organization. 

## Behavior in Rehabilitation Organizations: Differentiated Subgoals & One-way Communication

**Notes:**
This graphic shows the splintering of subunits in the rehabilitation organization, where different therapies often occupy separate units. 
Each therapy has distinct sub-goals, which become their focus of attention. 
Time and sub-goal pressures mean that the provider may limit discussion of possible treatment approaches with the TBI patient—thus creating limits on the rehabilitation focus of attention.

## Predicting Organizational Behavior

**(March & Simon 1958)**

**Notes:**
This March & Simon model encompasses rehabilitation as it occurs inside the organization. Yet TBI survivors spend only a small amount of time in rehabilitation services. For the most part, they are in their communities and homes. 
This model does not include the environment, where patients must take action to heal. It does not include the patient’s perspective on quality of care and the healing process. 
Where is the patient? Where are the patient’s goals? 
This model is not patient-centered care.

## A Patient-Centered View of Quality: Satisfaction, Relationships, & Outcomes 

**(Chilingerian 2004)**

**Notes:**
From a patient perspective, quality is not a simple concept but is best understood in terms of five dimensions, as described in Chilingerian 2004. 
Failure to include these aspects of quality from a patient’s perspective can be considered a justice issue (van den Bos et al, 1998).

## Two Complementary Paths to Performance

- Kim & Mauborgne 1997

**Notes:**
Kim & Mauborgne, in their seminal 1997 article, argue that justice is a performance issue. 
Their research with 19 companies found a direct link between organizational processes, attitudes, behavior, and performance. 
They argue that procedural justice in the form of fair process leads to trust and commitment, voluntary cooperation, and exceeded expectations.

## Fair Process & the Patient-Provider Interaction

**Look at people as individuals**
**Individually tailored plans**
**Give and take**
**Activate patient motivation**

- Kim & Mauborgne 1997;Van der Heyden et al 2005; Chilingerian 2006

**Notes:**
In the rehabilitation organization, fair process occurs at the patient-provider interaction. Fair process at this level is interactional and informational justice. 
Conceptually, fair process opens the door to bringing the patient’s expertise into the work of developing rehabilitation goals and strategies. With TBI, there are no cookie cutter solutions. Each patient’s injury and healing are different, and quality means tailoring rehabilitation plans to the individual. With fair process, there is give and take as providers explore diagnostic issues and treatments with patients, explain the rationale for decisions, and set expectations about roles and responsibilities. With fair process, evaluation and learning are mutual. 
The fair process model focuses on relationships and engagement. With this model, the “normal” quality improvement solutions—more time with patients, or marginal changes in incentives for example—are not necessarily helpful.
Rather, improving the provider-patient relationship and bringing a different expertise into the interaction are what may make the difference.

## Research Questions

- What is the TBI survivor’s perspective on living with this chronic condition?
- What does using an organizational theory lens contribute to our understanding of quality of care from the TBI survivor’s perspective?

**Notes:**
This is a study of lived experience with TBI. What is it like to live with this chronic condition? What are some of the facilitators and barriers to recovery from the patient’s perspective?

Quality, and efforts to improve quality of care, take place within organizations. How can using an organizational theory lens help contribute to our understanding of quality of care from the TBI survivor’s perspective—and perhaps in future help us to apply, or translate, this learning to quality improvement efforts in organizations?

## Study Population

- Photo-elicitation with 12 brain injury survivors
- Cognitive level of at least 7 out of 10 on the Ranchos Los Amigos Cognitive Scale Revised
- Recent survivors receiving outpatient services through a Boston rehabilitation hospital
- Long-term survivors participating in a state agency-funded support group

**Notes:**
This is a qualitative research study using photo-elicitation with 12 brain injury survivors, who use disposable cameras to take photographs of living with their injury, and talk with the researcher about their photos.
The protocol specifies that they have a cognitive level of at least 7 on the Ranchos Los Amigos Cognitive Scale, revised. They need to be able to focus for at least half an hour, work independently, and retain some learning between meetings. 
My sample has two types of survivors—individuals who have received their injury within the past year and are accessing outpatient rehabilitation services through a Boston Hospital, and survivors who are members of a brain injury survivor support group sponsored by the Massachusetts Rehabilitation Commission.

## Analytical Methods: Narrative Analysis

_**Living without Connection**_
_**Part 1: Why I took this picture**_
- Stanza 1: That’s how I felt
- Stanza 2: I thought that kind of depicted it
- Coda: A lot of unsaid things there
_**Part 2: Everything was new**_
- Stanza 3: It was like living in the middle of nowhere
- Stanza 4: It was as though you were just born anew
- Coda: Hard to explain
- Stanza 5: I basically laughed through every day
_**Part 3: How I see it now in hindsight**_
- Stanza 6: It all had to like be reestablished
- Stanza 7: I had so many gaps in my brain
- Stanza 8: My reaction was this laughter
- Coda: A perfect way to sum it all up
_**Part 4: I couldn’t feel really connected, in lots of ways**_
- Stanza 9: Are you really, truly connecting
- Stanza 10: That’s what I meant

- (Becker 1986, Gee 1991, Reissman 1993, Rose 2007)

**Notes:**
This study is using narrative analysis methods. They involve: 1) Looking at the details of selected images, as suggested by Howard Becker, 2) Parsing their accompanying interview text into its discourse units, as modeled by James Gee, and 3) Exploring the intersection between image and text, as encouraged by Gillian Rose. // Here we see an photo taken by my first pilot respondent, and a summary discourse analysis of what she said about her photo. For me, the visual and text data together tell us more than either can tell us alone.
In this image, we see a wire sticking out of the wall, not connected to anything. For this respondent, the image communicates how her brain felt when she was newly injured and for the first two or three years after. She felt that there were gaps in her brain, and her thoughts would bump up against these gaps and prevent her from connecting with other people and her environment. 
This analysis of her interview text structures her discourse into its idea units. I then grouped these units into 10 four-line stanzas and three 2-line codas. The stanzas address her perceptions of her brain injury; the codas reveal her perceptions about communicating using a photograph. I created a title for each stanza and coda, using key phrases by the respondent. And finally, I grouped the stanzas and codas into 4 parts, again creating titles using the respondent’s own words. 
This summary of the titles for the stanzas, codas, and parts is a type of executive summary, or abstract, if you will, of what this respondent said about this picture. The narrative shows coherence. In part 1, she introduces the picture and why she took it. Part 2 explains how she felt when she was first injured. In part 3, she distances herself from that time and looks at it from her current perspective. Part 4 sums up her narrative and what she meant. 

## Early Findings

- Respondents play a participant-expert role in this research
- The rehabilitation goal for long-term survivors may be healing, not recovery
- From the survivor’s perspective, healing can continue for years beyond the acute rehabilitation phase
- This study is an example of fair process in action

**Notes:**
Respondents play a participant-expert role in this research—only the survivor can really know what it is like to live with TBI and experience rehabilitation care. 

The rehabilitation goal for many survivors with whom I am working is healing, not recovery. Recovery implies a desire to return to a pre-injury status. Long-term survivors have accepted that they will not be able to return to their prior status. They see healing as cognitive, physical, emotional, and even spiritual. They feel they continue to progress over time—that their healing is not limited to the narrow rehabilitation services window of three to six months. They feel the continue to heal, even many years after their injury.

This study is an example of fair process in action. The photograph becomes the focus of the interaction and engages the professional as well as the patient in exploring experience and building relationships. For this study, the camera becomes an instrument of justice.

## Policy Implications of Fair Process

- Creates opportunities to engage with TBI patient’s real lives and gain an insider’s perspective on quality of care
- May align expectations about patient-provider goals, roles, and responsibilities
- Can promote interactional justice in patient-provider interactions and a more equal balance of power
- May activate patient motivation to adhere to rehabilitation strategies and take action to heal

**Notes:**
Fair process at the micro level creates brings the environment into the rehabilitation Fair process helps us expand the March & Simon model of focus of attention.
When providers apply fair process at the micro-level of the organization perhaps patient and provider expectations and goals may be better aligned. Will this improve performance, or outcomes, as predicted by the Kim and Mauborgne model? Perhaps, but that is a topic for future research.
With fair process, power in the interaction may become more. With fair process, patients feel that they are being heard. They become part of the solution, not just the problem. Using cameras is not the only way to achieve fair process, and it is not an approach for everyone. It is a good example, however, of a way to engage patients, improve communication under difficult circumstances, and work toward procedural and interactional justice. 
And finally, implementing fair process at the organization’s micro-level may activate patient motivation to adhere to rehabilitation strategies, and take the action needed to progress in their healing. Again, according to the Kim and Mauborgne model, these attitude and behavior changes could lead to improved outcomes. 
So, using an organizational lens helps to illuminate gaps in our knowledge and new avenues of research. Potentially an organizational lens will help us to identify ways to translate these research findings to quality improvement interventions in future.