The Missing Piece: CPOs are Bringing Patients’ Voices to the Table

holding patient's hand

Drug development over the past several decades has been a cut and dry process, for the most part: researchers at academic and private institutions provide insights to biopharma companies on what pharmaceuticals to pursue. Through rigorous research, scientists uncover molecular mechanisms responsible for aberrant physiological conditions in patients with a variety of diseases and then the race to develop a drug to repair or prevent those conditions begins.

Researchers may be motivated by several factors when it comes to the molecular mechanisms and diseases they choose to work on. These include available funding, personal interest and epidemiological information revealing diseases with unmet need. By marrying research with drug discovery, the biopharma industry has made billions of dollars from life-changing drugs and patients have reaped the benefits of therapeutics made to improve their quality of life.

And yet, a crucial component of the process is missing: the patient.

According to the World Health Organization, involvement of patients in their own healthcare is increasingly recognized as a critical component of safe, people-centered services. It improves treatment adherence, helps patients avoid hospitalization and promotes an overall better relationship between a healthcare provider and a patient.

However, it doesn’t take a global authority to announce that patients should be engaged in everything about their healthcare; patients themselves have made calls to be more involved as their concerns about bias, racism and unfair medical treatment, to name a few, go unheard.

Yes, biopharma has provided patients with a myriad of treatments that many would say are life-changing, and yet some patients may disagree with these sentiments because the drugs don’t target the symptoms or components of the disease they feel are the most impactful.

Biopharma is now heeding the call and many pharmaceutical companies are working towards including patient communities in their work, a much-needed step to understanding patient desires and concerns when it comes to therapeutics.

Chief Patient Officer (CPO) and Chief Patient Experience Officer (CPEO or CXO) roles are being introduced in pharmaceutical companies to help bridge the gap between companies and patients, a gap that has been left unfilled for decades. While these roles are still in their infancy, they refer to executive leaders who help biopharma companies get in touch with the patients they serve.

“The primary role entails, among many things, driving true cultural change within pharmaceutical companies that may have had a more conventional approach to patients and trials in the past,” Stephen Brengle, managing director of North America at WittKieffer’s Life Sciences Practice, told BioSpace. “It involves bringing all areas of drug development and commercialization together, from discovery to registration and launch to really think about patient centricity.”

CPOs can help biopharma companies do a lot of things, from instituting 24-hour helplines for caregivers and patients’ families to setting up decentralized clinical trials to increase accessibility and promote diversity and representation in trials. They can also help to simplify the clinical trial process for patients who might not otherwise consider participating. CPOs additionally can incorporate patients into advisory boards where they can be integrated into all levels of the therapeutic process and help biopharma companies learn what is most important to them.  

Most importantly, these roles bring biopharma’s leaders in contact with the most important group to consider: the patient.

“In the past, pharmaceutical companies centered drug discovery and development around the business model of commercial viability and profitability. Now, patient-centric approaches are beginning to rival that way of thinking, and more companies are listening to patients and focusing their efforts in the pipeline around developing therapies by patient need/demand,” Brengle said, emphasizing that these weren’t thought of even ten years ago. Previously, patients were kept at a distance from the process. Now, these roles promise to bring patient voices to the forefront of development and innovation.

Successful CPOs come from a wide variety of backgrounds, ranging from academic researchers to marketers, with no “cookie-cutter” mold for the position. What makes someone successful is a true passion for patient centricity.

“No one organization has fully mastered patient-centricity to the fullest potential possible; it's not really fully entrenched. There is much more to do and no specific skill sets or functions from which to derive top talent. Today, it's about finding the right person who is motivated to put the patient first and is nimble/agile to move across functions within an organization to bring teams together with attention and emphasis placed on patient-centricity,” Brengle emphasized. In fact, patients themselves may be expertly poised to take on such roles.

Centering patients in therapeutics leads to important outcomes in health care, namely medication adherence and improving the effectiveness of medication safety interventions. Patients also stand to have their concerns heard, which can help drive more effective interventions that target these concerns rather than what a doctor or biopharma company thinks is the concern. As Brengle put it, it’s a “win-win” for everybody involved if patient centricity is done right: companies promote and develop products that patients actually want, and patients receive therapeutics that improve their quality of life and promote better states of health.

Advocates of patient-centricity, including patients themselves, researchers and health care providers, have made further calls to include patients at even earlier stages in the process such as directly consulting them in any research endeavor that is focused on them. A popular phrase for patients has become “Nothing about us, without us”.

Research groups like the Patient Centered Outcomes Research Institute (PCORI) are working to make great strides in this area by providing funding and support to researchers who make patients their primary focus. PCORI specifically has three overarching goals: substantially increasing the quantity, quality, and timeliness of useful, trustworthy information available to support health decisions; speeding up the implementation and use of patient-centered outcomes research, and influencing clinical and healthcare research funded by others to be more patient-centered.

CPOs and patient-centered researchers may be able to team up to make an even larger impact on the biopharma industry, but for now, CPOs stand to make big differences in the way companies approach their therapeutic pipeline. By understanding the caregiver and patient experience, medical needs and what drives and influences these behaviors, pharmaceutical companies may change their priorities when it comes to the types of drugs they develop and how they commercialize them ultimately for the better.

“Drug development is about preserving and improving human life by developing cutting edge and innovative technologies for patients. As an industry, if companies aren't focused on the patients, then we should ask ourselves ‘What are we really trying to accomplish?’” Brengle said in closing.

It’s a fair question and maybe provides some foreshadowing into the future of CPOs where the role may no longer be needed because companies and researchers work towards engaging patients at all levels and seek their advice before beginning work. In the meantime, CPOs are providing a vital and crucial role in helping patients be heard.

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