What Does Patients Want from Pharma
Time is changing! So also different approaches and methodologies. It’s now time to listen to the patient. And look at the nose. These words were uttered many years ago during a workshop on allergic rhinitis . These deceptively simple words were spoken by Dr Bill Frankland, one of the most distinguished clinicians of the 20th century.
He emphasized on putting the patient experience first. He was of the opinion that listening to the patient was critical to understanding what interventions might be required.
His interest in treating patients like grown-ups was way ahead of its time. Even now, when the patient is speaking, the doctor may not always be listening. The opinion of the patients get filtered.
This is not just a failing of the medical profession. Though the healthcare advocates talk about patient-centricity all the time, but in practice that often remains on paper only.
Now what do you mean by patient perspective? The following is a definitive though not obvious list of patient needs, but it might provide a useful framework for discussion.
1. People and not patients
We don’t want our lives to be defined by illness. We are living beings and not passive objects. We need to live as people and not like patients.
2. High expectations
We desire importantly, even in the face of chronic or acute illness. This says the importance of mental health for a physical health, and vice versa.
3. Holistic wellness
Breaking down the barriers between the providers of education, nutrition, health, exercise, transport and social care and creating a genuinely holistic approach will need a revolution in thinking, but it is the only way to put the person at the center. The role of pharma here will be critical .
4. Rapid diagnosis
This means that the doctor will work out quickly what is wrong with us yet, sadly, and especially in rare diseases, this might not happen. For example, with Fabry disease, a leading UK expert said it can take 10 years and 10 specialists before a diagnosis is made in a child not previously identified as being in a genetically susceptible family. We need a better understanding of the costs of such delays in diagnosis in terms of wasted medical resources,family disruption, time spent and loss of childhood. For the affected individuals these costs are almost incalculable.
5. Sharing the experience
These personal costs depict the need for, and importance of, groups for patients to share their knowledge, provide each other support, speak in a strong voice and be powerful research partners. Even with more common diseases, there is a huge gap between proven best practice and what happens in the field. For instance, it took many years for ACE inhibitors to make way into everyday practice in the management of chronic heart failure and, even today, we struggle to sustain the condition in the face of really clear outcome evidence, leaving patients incapacitated, in the hospital and unable to perform simple acts of daily life.
More education is needed at every level, and pharma sector has a big role to play in listening to and informing both physicians and those they treat. Let this knowledge be both evidence-based and respectful.
We conclude here.
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