The integration of patients’ perspectives in self-management interventions research: why and how?

Evidence-Based Medicine (EBM) is the integration of best research evidence with clinical expertise and patient values. Since its first definition, there has been an increasing emphasis on the limitations of using evidence alone to make decisions, and the importance of the values and preference. In healthcare decision making, values and preferences refer to the internal processes that individuals use when balancing potential benefits and harms derived from treatment.

In COMPAR-EU, our focus will be to summarise how patients value the importance of outcomes and the factors that might influence achieving the expected goals of self-management interventions.

Patients’ values and preferences and decision-making

The integration of patients’ values and preferences can be considered an ethical mandate since patients are affected by the different healthcare decisions, including clinical recommendations. From a policymaker perspective, the evidence informing about patients’ values and preferences can help to delineate more patient-centred programs; and from a healthcare practitioner perspective, this evidence can help the process of decision-making  in clinical encounters.

Patients’ preferences are the result of experiences, expectations and attitudes towards health and disease. Evidence informing values and preferences is particularly critical in scenarios with scarce or low certainty of the evidence of effects; when it is necessary to make explicit these usually invisible aspects. There are diverse methods to obtain patients’ values and preferences, and these include both quantitative and qualitative research.


Ena Niño de Guzman

As a healthcare researcher, Ena is part of the Sant Pau team of COMPAR-EU. She leads the development of the work that will inform about the patient perspective throughout the project. Her PhD project is based on this work. She was recently awarded a Rio Hortega investigator contract by the Instituto de Salud Carlos III (Spanish Ministry of Health).

The patient perspective in self-management interventions

figure2The COMPAR-EU project aims to identify the most effective and cost-effective self-management (SM) interventions for patients living with one of four high priority chronic conditions (type-2 diabetes mellitus (T2DM), obesity, heart failure, and chronic obstructive pulmonary disease (COPD)).

As part of COMPAR-EU, we have conducted a scoping review of quantitative and qualitative reviews to explore values and preferences of patients regarding the role of self-management in these conditions. This work was part of the development process of four Core Outcome Sets (COS), defined as a standardised collection of outcomes which should be measured and reported at a minimum in all trials of a specific condition or a trial population. The objective was to identify which outcomes emerged from the available published research evidence. We analysed the main findings of selected reviews and identified common themes related with potential outcomes of interest when dealing with SM interventions, and developed infographics to facilitate the discussion between patients, caregivers, and researchers participating in the consensus workshop of the selection of the COS.

In COMPAR-EU we are now conducting four overviews of reviews of studies exploring patients’ values and preferences, to collect and summarise the patients’ perspectives with one of these four chronic conditions regarding SM interventions. In these overviews, our focus will be to summarise how patients value the importance of outcomes, and the factors that might influence achieving the expected goals of SM interventions. We will provide summaries of findings to inform the different decision-making tools that will be developed in COMPAR-EU. More specifically, we will explore the extent of the certainty and variability in how patients value the importance of outcomes. We will also obtain relevant information regarding contextual factors that have an impact on the acceptability and feasibility of SM interventions. Some of these findings will help to delineate implementation strategies for SM interventions.

Two-days workshop on NMA

During the 17th and 18th of February, a 2-days workshop on advanced methods for network meta-analysis (NMA) took place in Barcelona. We had theoretical and practical sessions on R Studio, including a fruitful discussion on the additive model for NMA and its implementation in the COMPAR-EU project. Thanks to Dimitris Mavridis from UOI for the stimulating lectures, and to Iberoamerican Cochrane Center and FAD for the organization.


Lifetime Medical Costs of Obesity: Prevention No Cure for Increasing Health Expenditure

Self-management not only means to deal with the current condition, but also pursuing a holistic approach to mental and physical wellbeing. Self-management complements medical treatment to become more effective and successful. “Self-management has empowered me to better know and understand myself on so many levels” explains Jacqueline Bowman-Busato in her contribution.

For at least the past 23 years, I’ve been living with two complex chronic, relapsing diseases: Autoimmune Hashimoto’s and obesity. And yet, I can only say that it’s been the last 18 months where I have finally felt in control of my two diseases in any meaningful way. And this has been due to finally understanding and embracing responsible self-management.

Let me explain from a patient’s perspective. When I consciously started the journey of firstly realising that I had “a thyroid problem” which eventually was diagnosed as autoimmune hashimotos, I didn’t understand that a simple pill wasn’t enough to minimise symptoms. Critically, none of my medical specialists seemed to know or care about this fact either. The resultant search for energy in the wrong places aggravated my hashimotos symptoms (severe malabsorption of vitamin D and B as well as iron which all present as depression and severe anxiety). And all very quickly led to developing obesity. I never discussed obesity with my GP for 20 years (the average is 6 years according to a new study Action IO). I “dealt with it” by following holistic diets which always had a beginning, middle and very quick end!

Self-management has empowered me to better know and under-stand myself on so many levels.

It´s time to change

It was not until 18 months post bariatric surgery on 4 July 2016 that everything finally clicked into place for me. I realised that regardless of the good intentions of the public health environment, the sad fact of today’s chronic disease environment is medical treatment of physical manifestations rather than a holistic approach to mental as well as physical wellbeing, not to mention a lack of positive motivation to work together with health professionals in an empowering and empowered way.

Self-management has meant that I have had to take a very long and hard look at myself, the good, the bad and the very ugly truths in order to forge a personal pathway towards managing my life in such a way to optimise my mental health and wellbeing. Armed with my newly gained (and acknowledged) self-knowledge, I forged my own objectives-driven processes for achieving my goal of “mental clarity”. For me, brain fog has been my biggest barrier to sustainable management of both hashimotos and obesity. Having an objective of brain clarity rather than weight or specific blood values has meant that I’ve been able to take control of my health much more than if I solely relied on medication and then wondered why I was still malnourished to the point of continuing to seek energy in foods which are basically poison to me. Giving myself parameters with well-defined processes has significantly empowered me and raised my confidence levels to collaborate with my health care team. I am now listened to and heard.


Jacqueline Bowman-Busato

As a patient representative, Jacqueline has advised the Innovative Medicines Initiative (IMI) on patient engagement strategy, and provides expert advice to the European Commission on self-care policies. She works extensively on European as well as global projects bringing the key stakeholders together to build lasting consensus on global, regional and national levels.

Empowerment through self-management

Science very clearly states that obesity is a chronic relapsing disease. It‘s not the fault of one or other individual. In my world, that does not mean that I have to accept whatever medication I’m given in isolation. It means that I use the treatment (in my case the radical treatment of bariatric surgery) as a tool and I supplement with my own process for mental and physical wellbeing to put me on an even playing field to be able to optimise the medical treatment. Self-management empowers me to engage with the system and my health professionals. It allows me to give myself a bit of certainty which is not anxiety causing. It allows me to feel a partner in my own health. Self-management has empowered me to better know and understand myself on so many levels.