Moving beyond the rhetoric of patient empowerment

Pf Editor Chris Ross says that delivering the government’s patient-centric mantra of “no decision about me, without me” will require the collaboration of all healthcare stakeholders.

The rise and rise of ‘patient empowerment’ has been an ongoing theme for healthcare both at home and abroad for many years. The UK pharmaceutical industry is obviously restricted in the kind of information it can communicate to patients due to the strict European regulations on direct to consumer promotion – but the need to develop informed and empowered patients is a growing requirement for public health globally.

Back in 2005, the ABPI published a report investigating information access for patients with cancer. The report highlighted the need for a more effective provision of appropriate information for patients all along the treatment pathway – in recognition of the shift towards developing more informed patients. The document said: “The government is moving towards full involvement for people with cancer in the decision-making process, but for this to happen, they will need to be empowered to understand and make the choices that will lead to the best possible outcome for their individual circumstances and condition.”

Fast forward six years and, while access to information has significantly increased with the proliferation of new media channels, the rhetoric from government remains the same: empowerment for patients across all conditions is important – but more must be done to deliver it. The NHS IT Plan has been widely condemned as an expensive failure from a previous administration. But the commitment to ensure NHS decision-making moves ‘as close as possible to the patient’ massively raises the stakes in the provision of relevant and accessible information for patients. “No decision about me, without me” is a catchy sound-bite that may play out well to an information-thirsty patient population, but delivering the promise remains an enormous challenge.

Tackling it requires a collaborative effort and continued dialogue among stakeholders across the health spectrum; clinicians, policy-makers, technology and informatics experts, suppliers, industry and, of course, patients. Pharma can and must have a voice in this important dialogue – but, within a justifiably tight regulatory environment (where failure to comply is actually considered criminal law), the question remains when, where and how can the industry contribute to the realisation of an environment where UK patients are empowered not just on paper, but in reality?

Chris Ross