Ryan Bailey, MA is a Senior Clinical Researcher at Rho. He has over 10 years of experience conducting multicenter asthma research studies, including the Inner City Asthma Consortium (ICAC) and the Community Healthcare for Asthma Management and Prevention of Symptoms (CHAMPS) project.
Whether you’ve been tracking the patient centricity movement for years or you’re just becoming aware of this trend, the concept seems to have reached a tipping point recently. Suddenly, everyone is talking about it, every industry conference is hosting sessions on it, and stakeholders throughout the clinical research sphere are starting to ask what patient centricity means for our trials.
Before diving into the practical ramifications of patient centricity, it helps to understand some of the factors responsible for the emergence of this trend. In this post, we examine a few of the driving forces behind patient centricity, and consider consequences for our industry.
You may also notice that this trend goes by many names: patient engagement, patient experience, patient centricity, patient focus, patient advocacy, etc. While there are nuanced differences to these terms, the underlying principle is the same: we, as researchers, should put concerted effort into understanding, caring about, and addressing the concerns of patients in our trials.
Three trends in particular have been reshaping the healthcare and research landscape when it comes to patient centricity: patient empowerment, personalized medicine, and patient dissatisfaction.
Patient empowerment is being driven by easily accessible information online and an evolving view of the traditional patient-provider relationship.
Gone are the days when a patient relies solely on the expertise of their physician to understand their disease. Patients of the Information Age can spend much more time exploring their ailments online than they can in conversations with their provider. Web-based resources span a wide range of content, from material created and curated by medical experts, to peer-reviewed research, to homeopathic remedies, to patient advocacy sites, to social media information and support groups. This access to information – even if it is unreliable or misleading – gives patients a greater sense of control over their disease. As a result, patients are increasingly bringing this information to bear on their treatment and disease management.
The patient-provider relationship is also evolving. Increasingly patients view themselves as consumers of healthcare, not passive recipients of it. Patients can now “shop” for providers, until they find one they like. Here again, the internet reinforces this trend by allowing patients to search for providers that meet their needs, research and post physician reviews, and seek recommendations from their social network. This is not necessarily a negative trend. Many see this as a positive development because it encourages physicians to provide the best possible care and maintain an amiable bedside manner.
Even as the patient perspective is changing, we also see a growing focus among researchers and medical professionals on providing care for distinct individuals, unique phenotypes, and specialized subgroups. Commonly dubbed “personalized” or “precision” medicine, this trend places even greater emphasis on understanding the unique manifestation of disease for an individual patient. Hence, both patients and physicians are pushing medicine to place greater emphasis on the individual patient.
It can be tempting to dismiss these developments as problems for providers rather than researchers, but the implications for our profession are just as important. Despite our efforts to distinguish clinical trial participation from healthcare, many participants view research teams as part of their care network and trial participation as a facet of their healthcare. As a result, research participants expect the same level of attention, care, and respect from clinical trial staff as they do from providers. As patients assume greater power, we have to ask if we are prepared to address the ramifications of these expectations.
If the rising tide of patient dissatisfaction is any indication, we are not yet doing our part to accommodate patient needs and desires in our trials. This is evident in the general disdain many hold for the pharmaceutical industry. A recent Gallup poll found that “of 25 different business sectors, only the federal government is held in lower esteem” than the pharmaceutical industry.
However, we must avoid reducing this to a mere PR problem. Individual patients are also voicing their frustration with clinical trials (see the patient statements below).
“Interacting only with interns, nurses, or nurse practitioners and not principle researchers feels like a real blow off. If patients are not important enough to draw the researcher’s attention, why should patients bother going to the effort to participate in research?” – Sarah Kucharski
“The social contract of the randomized controlled trial is imbalanced: patients adhere to arduous protocols, are randomized to placebo, and are blinded to their health status.”Subjects no more: what happens when trial participants realize they hold the power?” – Paul Wicks, Timothy Vaughan, James Heywood
“The process of getting my mother enrolled into a clinical trial for patients with ALS took a very long time, which was a huge delay. My mother died before she was enrolled…She felt like we were always fighting the FDA and that the FDA was ‘protecting her’ to death.” –Cathy Collet
This is only a small sample, but it is not hard to find many more quotes like these from patients who are disenchanted with clinical research. If you’re like me, your first instinct may be to get defensive and respond to these critiques with well-reasoned arguments about the benefits of our work, but that won’t be productive. A more appropriate response for us is to listen to the sincere concerns our patients are voicing, and respond with empathy.
Our industry relies entirely on the willingness of patients to participate in our trials. If you have ever experienced difficulty meeting enrollment, retention, and adherence goals, you can appreciate the threat of a disengaged patient population. Our response should not be to argue away the frustrations of the dissatisfied, research-averse patients, but to embrace them, learn from them, and adapt.
This is where patient centricity comes in. As the term suggests, patient centricity is about putting the patient, and their needs and concerns, at the heart of what we do. It’s about learning to view patients as partners in the research process, not merely a pathway to a payday. It’s about listening to their needs and rethinking the way we conduct research.
The good news is that patient-centered practices need not be difficult, expensive, or onerous. In fact, some of the simplest and easiest strategies can make a dramatic difference in patient engagement. We’ll explore some of these, and the positive potential for patient engagement in our next post.