The current landscape
With the fast-paced development of new healthcare interventions, there is increased pressure on healthcare systems to utilise those interventions in line with patients’ expectations to improve clinical and Quality of Life (QoL)outcomes. However, the opinions of individuals may become lost in the accumulation of data and evidence available. Utilising novel treatment and technologies to match healthcare with the needs of individuals increases the chance of patients’ compliance with the prescribed intervention. This in turn leads to improved outcomes and ultimately, reduced burden on the clinical environment.
In addition, uncovering patient insights allows for a better understanding of the needs of individuals and directing Research and Development efforts to meet those needs –in turn, increasing the uptake of technologies and treatments.
In order to capture high-quality insights, it is essential to adopt robust methodologies well-established within the scientific environment. Currently, the majority of research methods used in market research are aimed at providing insights for commercial solutions, solely for the purpose of internal decision making. However, for rare diseases in particular, research may uncover hitherto unknown or characterised patient perspectives that add to the evidence base and are worthy of publication. Introducing robust well-established qualitative methodologies recognised within the scientific community increases the chance of publication in a reputable journal. On that note, publishing has several advantages.
The importance of data dissemination
Data dissemination is crucial for contributing to the scientific conversation and providing value to the wider expert community. In addition, it increases the expert profile of the researchers and contributors, demonstrating thought leadership within the field. Patient perspectives are becoming increasingly important to healthcare providers and HTAs –we discussed this previously in another article within this series (please contact us for details)1. Publishing patient-centric research helps to provide information of value to patient organisations and advocacies and establish open and transparent conversations. Conducting robust research that contributes to the wider scientific landscape, gives justice to patients and caregivers who contribute their time, discussing often difficult experiences.
But how can we explore those complex concepts through robust means to deliver meaningful insights that contribute to understanding and the published literature?
Phenomenology – seeing the world through patients’ eyes
The scientific conversation can be enhanced by introducing robust, well-established academic methodologies Phenomenology is one of the most commonly used qualitative methodologies within the scientific environment.2
This approach is unique due to its dual nature –it was originally developed as a philosophy and has been later adapted as a qualitative framework. Through years of development and scientific conversation, phenomenology has been developed to be a robust approach, allowing scientists to see the world through patients’ eyes.
Phenomenology is a method focusing on the lived experiences of participants and the description of experienced phenomena3. In essence, it is how the world appears to the person experiencing it and seeks to describe this experience in detail to understand the structural features of the phenomena. What sets phenomenology apart from other approaches such as behavioural psychology or explanatory theories, is the subjectivity of the experiences. However, these are not confined to understanding at an individual level and can be explored in more generalisable terms, often through the use of mixed-methods research.
To gain a full and unbiased picture of the phenomena as experienced by the participants, a phenomenological researcher uses a technique of ‘bracketing’. ‘Bracketing’ is a concept often used by experienced qualitative researchers but particularly important in phenomenology. ‘Bracketing’ is a technique of removing preconceptions, biases and assumptions prior to conducting and analysing a study4. This can be often done through memoing and journaling to record automatic thoughts and prejudices.
Additionally, phenomenology can be combined with a thematic analysis approach5.Particularly useful for identifying patterns of meanings across datasets, this can be approached through either an inductive semanticor deductive latent means, depending on the dataset available.
How and when can phenomenology be applied?
As a structured and robust methodology, phenomenology can be applied across various disciplines and research questions. However, it is particularly useful to uncover the ‘truth’ as seen through patients’ eyes. In healthcare research, phenomenology has a key benefit of understanding patients’ experiences of receiving treatment, living with a condition or informal carers delivering care to their loved ones. Uncovering those insights enables an in-depth understanding of the unmet needs to direct patient-centred research and product development.
In clinical research, this approach can be used to elicit a definition of a phenomena for the development of Patient-Reported Outcome Measures (PROMs) and design truly patient-centric clinical studies. Equally, phenomenology can be also utilised for modelling patient’s experience of healthcare systems to map their journey and identify potential opportunities for further support.
Considering the patients’ and carers’ experiences is gaining strong traction within the healthcare landscape, including patient-centric product development and HTA submissions. Phenomenology is a flexible, yet robust and well-established research approach concerned specifically with participants’ lived experiences. The use of a robust qualitative methodology increases the value and credibility of research, provides more detailed insights, and may lead to an increased chance of successful evidence dissemination. If you would like to know more about how 7i Group can support you with understanding patients’ lived experiences and data dissemination, contact us at email@example.com