What’s the key to making healthcare more engaging to patients? Some industry pundits look to health information technology to build a more engaging experience for patients.
However, Steve Wilkins wisely suggests a different approach. To build a more engaging experience for patients, Wilkins suggests all of those involved in the health field to “be more engaging” to those who have already engaged in their health.Put another way – Wilkins challenges health care providers (doctors, nurses, even office staff) to be more human to those who have come for advice and treatment with regards to their health.
Now providers tend to not consider the patient’s perspective when it comes to engagement. For most providers engagement means getting patients to do what providers say is in their best interest. But that approach totally dismisses the fact that patients are already engaged, just not in the same way that providers expect.
So, how might we make clinical trials more engaging? What if:
- Trials were designed by a large and diverse pool of participants, instead of a small, private enclave of experts. Each trial needs thought leaders and researchers, but also patients and patient-care advocates, including practicing physicians, nurses and technicians who are well-acquainted with the patient experience. With a more diverse set of perspectives considered in the design, patients would be better understood and served.
- Trials were built with more perspective on the “ground level truths” of participating in the trial. We need more practicing physicians (and others with an understanding of the realities of clinical trials) involved who could provide a much-needed practical perspective on how the trial would work within the larger picture of current, practical patient care. Doctors, nurses and techs who are practicing medicine every day are more aware of the current trends and practices in healthcare, and more aware of patients’ needs and could provide pointed feedback into how the trial fits into local clinical practice realities.
- Trials took greater account in geographical and cultural differences. Trials are occurring in many places around the world, but are designed primarily from the sponsor’s frame of reference – often American. Trials will be a much more welcome option if they are framed with appropriate cultural idioms, habits and preferences. This includes how patients move through a healthcare system from first line of care to specialists to follow-up care. Our assumptions of where and how to engage patients is often ignorant of local practice realities. This is especially critical in phase II and III clinical trials where multinational studies are the norm.
- Trials increased the focus on the holistic needs of the patient in the study, rather than just on the scientific merits of the treatment. Clinical trials for registration approval purpose are rightly targeting safety and efficacy of the treatment. However, from a patient point-of-view, there are additional, often very personal health outcome factors that matter. For example, in a pain medication study – the trial would measure pain relief using a pain scale of 1 to 10. Improvement is to have a lower pain number. However, a senior citizen’s definition of a pain measure might be related to mobility and activity such as: “Am I able to play in my garden with my grandchildren?”. Patients will be better served by – and more drawn to – clinical trials that incorporate their frame of reference as well as the safety and efficacy measures.
- For our last item, let’s consider a more radical change to clinical trials. What if trial sites were rated against one another? The performance of health care delivery needs to be assessed and scored. Yet for clinical trial research sites, performance as it relates to accommodating patient needs, is absent. If we can achieve performance feedback directly from those who took part in the trial, we could capture and act upon these valuable viewpoints. Also, trial participants would feel listened to, adding to the engagement factor of such a system.
There are many benefits to increasing engagement with trials. For example, if trials were more engaging, there would be easier access to clinical trials and the benefits they bring for participants. Also, for those conducting the trials, if word gets out about the ease of participating in a trial, the trial would attract and retain more participants, helping everyone involved. Enrollment would improve, research would be accelerated and patients would get greater value from their participation.
