In healthcare, the value of patient opinion and 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 clinician-friendly format.
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. It uses detailed patient experience interviews, along with social media monitoring and pre-existing research to create a journey and show where needs are not being fully met.This is based on a technique known as interpretative phenomenological analysis (IPA) and is always defined by patient - not clinical - language.
We conduct qualitative, semi-structured interviews, with each in-depth discussion audio-recorded and analysed. 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, it represents a landscape of organised clues illustrating how people manage living with a health condition.
All evidence is captured into a dashboard-style system for analysis and referencing (see above image).
By capturing and coding each 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 business case or a boardroom, 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 Patient Voices into Lifelines
We are now using social media monitoring (SMM) software to extend our studies. This enables us to examine thousands of blogs, forums, social networks and micro blogging sites. From this, we can surface conversations, aggregate information and conduct more comprehensive analysis of patient experiences.
We interpret this sentiment into direction, overlaying the insight to augment our primary interviews.
Listen – Monitor social interactions to surface the conversations happening online around topic
Measure – Analyse the buzz
Manage and ensure accuracy of conversation around therapeutic areas
Engage – Recommendations for how stakeholders can be relevant in joining the conversation
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 firstname.lastname@example.org.