By Suzann Johnson and Katie Mazuk, Janssen
At Janssen, patients are at the center of everything we do. And we’re constantly working to improve their experience.
In our ongoing efforts to deepen our engagement with patients and investigators, we asked both groups how we can improve the clinical trial experience.
The feedback was eye-opening.
Investigators cited how complex it can be communicating with patients, even those patients with significant trial experience. One investigator recalled hearing a patient say, “I heard what he said, but to be honest I did not understand a single thing.” To balance these conversations and help patients understand their role in trials, investigators expressed a desire for soft-skill opportunities that would foster a better relationship.
Patients reported the need for a more personal connection with the clinical site staff. That connection would help them feel more engaged with the trial — fostering a deeper relationship with the investigators — while also helping them integrate the trial more seamlessly into their lives.
In response to this feedback from investigators and patients, Janssen worked with Johnson & Johnson behavior scientists to create a proprietary framework to facilitate communication in the clinical research setting: HealthCaring Conversations. This initiative is a key tenet of Janssen’s mission to continue deepening engagement with patients and their healthcare professionals — ensure clinical trials are as fruitful as possible for all participants.
The skills embedded in this framework have underpinnings in multiple evidence-based theories, principles, and strategies. The framework is also simple to understand and implement, with the goal of increasing patient and provider engagement while facilitating patient-centered conversations.
The framework is focused on three key areas:
1. Understanding Interest and Motivation
Patients are people. They are individuals. This may seem like common sense, but it’s essential to demonstrate empathy for a patient’s situation and questions. The program framework is designed to help healthcare providers better understand patient interest and motivation in clinical trials. This increased understanding ensures each patient is seen as a valued research partner and not simply treated as another number. Acting on patient perspectives early and maintaining an ongoing dialogue helps us deliver solutions that better meet patient needs.
2. Deepening the Connection
The deeper the connection, the more a patient will be engaged in a trial. We repeatedly heard from patients that close relationships with site staff are essential for communication and support purposes, but patients don’t always experience that connection. That needs to change.
Using the framework, Janssen site managers help enhance site staff skills, and reminding them to use easy-to-understand terms when discussing trial details and to connect trial opportunities to patients’ personal situations — to help ensure patients feel genuinely invested in the trial.
3. Empowering Patients
Patients who feel empowered to be an active participant in trials are far more likely to provide meaningful feedback and data that can help investigators improve the trial experience and construct better trials in the future.
We equip site staff to build patient relationships that are founded on trust and clear, honest communication. This means showing and telling patients about all aspects of a trial using the full suite of communication tools at our disposal, and encouraging patients to make informed decisions based on all the information provided.
To improve future development of HealthCaring Conversations, Janssen conducted a pilot program over the course of eight weeks. After, we gathered site coordinators and staff responses by conducting focus groups with site managers, interviews with central teams, and pre- and post-pilot surveys. This mix of qualitative and quantitative sources provided a complete view of the pilot’s results from the investigator perspective.
Of the site staff and managers who were educated on the initiative, 81 percent felt motivated to apply what they learned in the course of their patient conversations, and 98 percent said they are likely to use the concepts in the framework of future clinical trial communications with patients.
We’ve been using the HealthCaring Conversations framework, and the good news is that, so far, it’s working.
As an industry, we must prioritize building rapport with the patients who have instilled their trust and made a commitment to help researchers learn more about a disease and improve healthcare in the future. It’s equally important for healthcare professionals to feel they have the support they need to build strong relationships with patients.
We expect the impact from HealthCaring Conversations to grow further as we institute feedback to help healthcare providers understand, connect, and empower each patient. Looking ahead, the team will roll out the initiative globally this year in the hopes of collecting metrics across the enterprise, with an enthusiastic response from Janssen sites employing the HealthCaring Conversations model.
We are deeply invested in the health of our patients and are committed to supporting healthcare providers and the patient relationship in the clinical trial setting. The more clinical trial sponsors do to show empathy and personalize interaction with patients, healthcare professionals, and site staff, the better trials will be.
Let’s make that connection and build better trials, together.
About The Authors:
Suzann Johnson currently serves as the associate director of the Clinical Insights and Experience team, within the Global Clinical Development Operations (GCDO) organization at Janssen Pharmaceuticals Companies of Johnson & Johnson. With a career spanning over 40 years, Suzann built both pharmaceutical and healthcare industry experience, spanning research operations through marketing. Suzann is responsible for developing the outreach strategy and framework for building a culture of clinical trial participation, and leading initiatives to build better communication between patients and clinical trial staff. Prior to this role, Suzann worked across a multitude of areas within J&J, including behavioral health and patient recruitment and retention, and has now added patient experience to her areas of expertise.
Katie Mazuk is the VP of Clinical Insights and Experience within the Global Clinical Development Operations (GCDO) organization at Janssen Pharmaceuticals Companies of Johnson & Johnson. In this role, Katie has responsibility for curating clinical trial insights to support operational strategy, delivering data-driven clinical trial feasibility and data science capability, in addition to oversight of the clinical trial portfolio. Katie also leads strategy and deployment for Janssen’s investigator and patient clinical trial experience, inclusive of patient engagement activities for recruitment and retention, serving as an integral player in embedding Janssen’s approach to patient and investigator engagement across the entire organization.