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 – interviews, blogs, and so on. Such data isn’t in a format that clinicians are used to, and they sometimes struggle to accept it as a reliable ‘evidence base’.
So we set out to create Lifelines – a way to make patient experience data more measurable, but without losing the richness and reducing it to simply score and ranking questions.
The universal benefit of Lifelines studies is that they are patient-centric in their outcomes. Lifelines can help bridge gaps that exist between different parts of the health system and between health and social care that 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 (this can include carers and loved ones as well as patients). It uses detailed patient experience interviews, along with social media monitoring and pre-existing research to identify gaps for where these important issues may not be meeting the needs of patients. Our analysis is based on a technique known as interpretative phenomenological analysis (IPA), after which we display our insight as a journey, defined by patient language, not clinicians.
As you can see, it is visual and illustrative – an aid to understanding rather than a quantitative assessment. The insight is presented not as quantified numeric data, but as organised clues illustrating how people manage living with a health condition.
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.
The Lifelines methodology is based on qualitative, semi-structured interviews, with each in-depth discussion audio-recorded and analysed for high level themes /lower level evidence. The technique develops insight from life ‘episodes’ rather than responding to predetermined topics, and combines these to create a ‘landscape’ of what’s valued as important, vs. how well it’s delivered.
All evidence is captured into a dashboard -style system for analysis and referencing
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.
And through working back from the ‘end-frame’ accounts of how patients experience a product or service in their everyday lives, we can design back too, towards how processes can be improved, products reengineered and even new products developed.
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 is about uncovering and interpreting the experiences and needs of patients and those around them. Its guiding principle is to frame healthcare needs in the context of how they are perceived by individuals, rather than those delivering healthcare services. Lifelines casts the patient in the role of ‘expert’, and seeks to learn directly from their views, stories and experiences, 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 dealing with the complex world of healthcare environments, clinical commissioning groups, wider NHS services and local authorities. We believe strongly that such patient-centric information contributes greatly to how healthcare organisations can measure and monitor the services they provide. Such measurement also enables a route to improvement and to support individuals to make choices in their healthcare.