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Capturing the Patient’s Perspective – An example from a diabetes clinic

Remit: To explore the experiences of patients attending a diabetes out-patient clinic following diagnosis. The client was particularly keen on the use of Discovery Interviews and that any service improvements would be based on a reading of the full individual transcripts to members of the out-patients team. This approach was considered to lack sufficient structure to maximise the benefits that could be derived from the potentially rich source of information. It was therefore essential to select the most appropriate methodology that would deliver key insights to enable effective decision making. The objective being to deliver these key insights as a compelling holistic narrative or story, by drawing together and integrating the different strands of relevant evidence with the in-depth analysis of each patient’s experiences. Discovery Interviews were selected as the appropriate data collection methodology and a topic spine was developed to cover the various touch points of the patient’s journey. The client agreed with the proposal for the analysis and presentation of the findings as a holistic narrative. Nine patients in all were selected on the basis of criteria that would provide specific insights rather than a demographically representative sample providing a range of experiences. Brief face-toface open-ended interviews were also conducted with key members of the outpatient team. Other existing documentary evidence was collected that was considered helpful to the analysis. The analytical approach consisted of listening and reading the transcripts from which was mapped the big picture in order to identify the evidence which was having the biggest impact as well as the overall storyline and to compare and contrast the emerging themes and patterns. This was achieved using the ‘cognitive mapping’ technique, which is a useful approach to plotting the story of an individual which can be developed to provide an account of individual patients with similar experiences. Concurrent with this a thematic and content analysis of the detailed findings was undertaken.

Drawing together the qualitative data and existing documentary evidence, the analysis included, examining the ‘weight of evidence’ in terms of the balance of opinion and depth of feeling, as well as the direction of evidence regarding the internal consistency within each data source and external consistency across the different data sets. The findings were presented with the focus on the end decision making process. This required a move from the traditional - and often criticised – ‘building block’ approach to reporting to one providing a holistic narrative that gave a coherent and plausible story that accounted for the patterns in the data. This enabled for example to demonstrate to the client with supporting evidence as the story unfolded, that a key finding was that patients were experiencing ‘information overload’ on their first visit. This led to the clients remodelling the process to one where only key and important information is given to the patient during
first visit.

PROMs case study

"We did some superb research into the experiences of people with diabetes which influenced change and improvements at GP practice level and where we developed guidelines and developed services for diabetes in conjunction with providers. Keith is an expert in this field, has a great personal style and produced actionable results."

R&D Manager