Patients are central to healthcare, but when it comes to medical research, the patient experience has not always been a main priority. Traditionally, we have seen a focus on disease-centric outcomes or survival outcomes as measures for success, but these approaches have their drawbacks.
Many patients are skeptical about clinical trials, fearing the safety, severity, efficacy, placebo and side effects of the treatments offered. That’s because patients face the unenviable task of finding the right balance between the effectiveness and toxicity of a drug. Physicians might be tasked with finding the right dosage, but patients are the ones who experience the effects of finding the right dosage.
The pharma industry has to find new ways to respond to patients who are increasingly self-educated and engaged.
Education around medicine is not always intuitive, and the result, per a survey by the National Consumers League, is that nearly three out of four Americans admit taking prescription drugs incorrectly.
Voicing her concerns on the matter in an article on PharmaVoice.com, Vera Rulon, director of external medical communications at Pfizer, said: “Often, new products are created or healthcare delivery process changes without incorporating patient input. This can lead to a solution that is not helpful to patients.”
How pharma (and regulators) are becoming more patient-focused
Fortunately, the situation is changing. According to the Patient Engagement Solutions Market report, the global patient engagement market is expected to reach $16.39 billion by 2020.
This is being spurred on by one of the biggest trends in the industry: the search for value within medicines. In this context, value is defined as outcomes achieved per dollar spent. But the question increasingly being asked is value for whom? The answer is almost always the patient, and thus we are seeing patient-centered care and outcomes taking center stage in conversations about quality and value.
The pharma industry is adapting and exploring ways to respond to patients who are increasingly engaged and self-educated. In order to meet patient expectations, pharma companies are promoting their websites as destinations for patient-focused information. They are making better use of social media as a way to engage with patients. The industry is also recognizing the role technology can play in supporting and engaging patients during the clinical trial process.
Continuing this trend, the European Commission is working towards making clinical trial results more accessible to patients. Lay summaries are becoming more patient-friendly, explaining complex scientific data and concepts in simple language.
Will a new approach alleviate patient skepticism?
When pharmaceutical companies understand patient’s experiences at the research phase, they’re better able to inform patients future choices. This means patients can be more actively involved in their treatments, and thus help boost their own outcomes. From knowing what to expect based on their personal characteristics to understanding how they can improve their own outcomes, focusing research in this way gives patients a voice. The more patients understand about clinical trials, the more trust they will have in them – and the better those trials will be.
Ultimately, the goal of patient-centered outcomes is genuine transparency between the industry, patients and society. In turn, this will help shape more effective and engaging medical communications for the future.
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