This information needs to be collected on a number of dimensions including:
- Perceived humanity of care.
- Pain and dignity.
- Patient reported outcomes.
- Complaints, comments and complements.
These need to be measured at different times (humanity and dignity in real time or shortly after, outcomes at a later point). Satisfaction is now seen as an inadequate way of capturing information and prone to a number of biases, the patient’s actual experience provides richer and more actionable information.
A range of qualitative and quantitative methods are required ranging from individual patient stories and interviews through to real-time data capture through electronic devices.
It is important that these are not treated as a set of add-ons to the ‘real data system’. Patient experience and involvement needs to be embedded in the quality framework of organizations and woven through Board strategy, contractual arrangements, staff training, individual performance targets, etc. Executive and clinical leadership that can create a culture where patient experience is continually improved and where concerns and complaints are welcomed and learned from, needs to be in place.
The Board should be aware of the complaints and key quality concerns within the organization and the actions being undertaken to address these. A key point is that data created by clinical teams needs to be fed back rapidly with support in identifying trends and solutions.
For payers and life science organizations the lessons are the same – what has been focused on may not be what is of most importance to patients, what has been measured may not be what really matters, and rich data about how patients actually experience care is vital.