In Pursuit of Patient-Centeredness

Can Life Science Companies Play a Role?

Patients are integral members of the health care team and their thoughts and values are key to clinical decision-making.

At THCQ Consulting, Inc., patient-centeredness and health equity are cross-sectional themes foundational to all of our work. Our patient-centered lens is influenced by experiences in pharmacy, clinical trial research, health care quality, as well as our own personal experiences with the health system. We are interested in discovering how we, as a system, can better understand the perspectives of patients and caregivers and capture, measure, and assimilate those perspectives with those of health care teams to inform clinical decision-making.

About ten years ago, I attended a forum at the Mental Health Center of Denver (MHCD) where the CEO, Dr. Carl Clark, spoke about the mental health recovery assessment that MHCD clinicians complete for patients every three months. When he shared that MHCD also had a patient-reported version of the assessment, this piqued my interest.

“Dr. Clark,” I said, “Do you expect the results from the clinician- and patient-reported versions of the mental health recovery assessment to be in agreement?” Dr. Clark replied, “We don’t expect anything, but when we notice a lack of agreement, our multidisciplinary team talks about it.”

Dr. Clark then spoke about a patient living with schizophrenia, let us call them Pat, whose clinician rated their mental health recovery as improving. To the healthcare team’s surprise, Pat rated their own recovery over the same period as worsening! Dr. Clark conveyed to me and the forum audience that following the MHCD team discussion and a discussion with Pat, it became evident why there was such a difference in the recovery ratings.

The Key Insight: The MHCD team learned that as Pat’s thinking became clearer, because of diminished psychotic symptoms, he began to realize the highly dysfunctional relationships in his family. But when Pat was severely symptomatic, the family dysfunction was not a concern. Factoring in Pat’s input led to the key insight that a psychosocial intervention may have been warranted, whereas based on the clinician-rated assessment only, a different intervention would have been considered.

From television commercials to hospitals, we see references to patient-centeredness in many places, but what does it really mean in the health care we receive?

Another quick story for you. Check out the sign below that I noticed in the waiting room at Penn Medicine, as my son recently underwent elective shoulder surgery for a labrum tear from a baseball injury. You can certainly see how this speaks to the value of patient-centeredness at Penn Medicine.

Our Big Question: How do we ensure that we don’t miss the perspectives of patients and caregivers regarding their care as they navigate the health care system?

A reflection: Having worked as a clinical researcher across three pharmaceutical companies for 15 years, I saw first-hand the quantity of data that life science companies collect and the significant amount of clinical trial data that originates from patient-reported assessments. While this is commendable, I feel strongly that many of these assessments often do not reflect the authentically lived patient experience.

Instead of patients, it is often physicians, clinical scientists, or key opinion leaders that inform the composition of many patient-reported assessments. This is an area where life science companies can positively impact change – and thus improve the culture of patient-centeredness in healthcare.

For example, life science companies may start with strategic partnerships and engagement with patient advocacy organizations (e.g., National Patient Advocate Foundation, National Kidney Foundation, National Alliance on Mental Illness, Transplant Families, etc.), organize focus groups, or form patient advisory boards to obtain input from patients and caregivers. There are also opportunities to partner with innovative data science companies that enable research-curated gathering of patient insights at scale (e.g., Semalytix, with whom, full disclosure, THCQ Consulting has a formal partnership). Lastly, life science companies can play an important role in the patient-centeredness of value-based accountability – and do so by using patient-reported outcome assessments in clinical trials that are also CMS performance measures which hold great relevance to payers, providers, and patients (i.e., PHQ-9, Back Pain After Lumbar Discectomy/Laminotomy, Functional Status Assessment for Total Knee Replacement).

Our take? Patient-centeredness is like beauty, in that, it is in the eyes of the beholder. For it to be embedded in the culture of the organizations and people that deliver care, the perspectives of patients and caregivers must be sought after, appreciated, regarded, and understood.

Interested in hearing your thoughts,

Norris Turner, PharmD, PhD

President & CEO, THCQ Consulting, Inc.

nturner@thcqconsulting.com

SUMMARY

Overall, we must determine how the perspectives of patients and caregivers can be used along with those of the health care team to inform clinical decision-making.  

Patient-centeredness and health equity are cross-sectional themes foundational to the work of THCQ Consulting, Inc. Thus, we challenge life science companies to bring focused, prioritized business strategy – by seeking patient perspectives and patient-informed insights – anecdotally and at scale – coupled with innovation to the identification and application of patient-reported assessments in clinical trials. We also challenge life science companies to think anew about the potential broader utility of patient-reported outcomes data from their clinical trials.

QUESTIONS FOR YOU

1. What does patient-centeredness really mean for our healthcare system and what role can life science companies play in making it better?  
2. How do you envision patient-centeredness to be integrated into our healthcare system on a practical level, in a way that leads to tangible, measurable benefits?

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