In healthcare, the value of patient experience is now widely recognised in helping to support improvements in care provision, products and services.
However, the richness of patient accounts are usually uncovered from qualitative studies and rarely in a format that can engage across multiple stakeholders.
So we set out to create Lifelines™ - a way to make patient experience data measurable and evidence-based, without losing the richness.
The universal benefit of Lifelines™ studies is that they are patient-centric in their outcomes. They can help bridge gaps between different parts of the health and social care system, which can make truly patient-centred services difficult to develop.
How Does It Work?
Each Lifeline™ portrays a landscape (see example above), illustrating the things that matter most to people living with a health condition.
We conduct qualitative, semi-structured interviews, based on the academic methodology Interpretative Phenomenological Analysis (IPA), which is centred on the individual experiences of participants and how they make sense of them. Experienced IPA practitioners are skilled at both enabling patients to describe their experiences, and then interpreting these narratives into themes and sub-themes. Each interview is analysed in its own right to reveal clues and key moments, acknowledging the uniqueness of the individual. Where experiences converge, groups experiential themes are created, which underpin the Lifeline™ itself. Rather than responding to predetermined topics, insight is developed from relevant episodes in a patient’s life. Instead of presenting our findings with numeric data, Lifelines™ represent a landscape of organised clues, illustrating how people manage living with a health condition. Lifelines™ visualise a patient journey and show where needs are not being fully met. The Lifeline™ data is drawn from both the frequency and intensity of issues described - as identified in the interview transcripts.
Analysis and insight is captured into a qualitative data analysis (QDA) to enable comparison across cohorts or metadata components, offering complete drill-down referencing (see above image).
By capturing and coding each participant comment from every interview, the result is a forensic approach to experience research; creating an evidence base to back up our findings that is as compelling in a presentation, as it is in a peer-reviewed research journal.
Our Lifelines™ patient insight programmes have been used across a wide range of health conditions, from Arthritis, Asthma and Alzheimer’s Disease, to less common conditions such as Haemophilia, Myeloma and severe Migraine.
Adding further insight with AI Analytics
We are now using cutting-edge AI machine learning to extend our analysis of patient stories and experiences - this technology enables us to augment convergence and divergence analysis across patients. With each AI query, researchers provide moderation to ensure data quality review is conducted at every stage.
What are the benefits of using Lifelines within Healthcare?
Lifelines™ casts the patient in the role of ‘expert’ and seeks to learn from their holistic experience, not just their symptoms. By bringing the lived experience of patients alongside more traditional healthcare information, our work can enable a far richer understanding of patients’ quality of life, as well as where and how it may be enhanced.
Examples of how patients and healthcare professionals (HCPs) can apply Lifelines insights include:
Identifying needs that can be met by developing integrated or multi-disciplinary care plans, incorporating health, social and preventative care. In addition to defining needs, Lifelines can also highlight to HCPs how patients understand existing service provision, and the degree of confidence they have in them.
Pinpointing areas and issues where patients are seeking to manage their own care, including the information they need to do this
Descriptions of ‘what good looks like” – patient-defined examples of how and when specific environments, services and support tools can support individuals across the patient pathway
Precision insight into the advantages and shortcomings of medical device design, including how digital devices and services may play a future role for improvement
Detailing clues that enable (or prevent) early/earlier diagnosis to take place
Building a catalogue of ‘patient-led’ tricks, traps and tips that patients learn and develop over time, as they come to terms with their condition, which can help others
Outlining life events that can signal a need for emotional, psychological or practical support, impacting a patient’s ability to cope with their health condition
From the many Lifelines™ studies we have conducted to date, patients and carers have provided highly detailed insight into how they experience the complex world of healthcare systems from CCGs to wider NHS services and local authorities. We believe strongly that this patient-centric information contributes to better measurement and monitoring by healthcare organisations.
For further information about Lifelines™, please contact info@customerfaithful.com.