Helping decision makers making informed judgments: COMPAR-EU decision-making tools

COMPAR-EU is starting its fourth year, and now, after completing the network meta-analysis to estimate the relative merit of self-management interventions, we are also working to facilitate the use of this new knowledge the project is gradually delivering. One of the key steps of COMPAR-EU is the development of different outputs to facilitate decision-making for different stakeholders and scenarios. The goal is to produce interactive tools for health care professionals, patients, and policy makers, among others.

The tools that are being developed are Summary of Findings (SoF) tables, Evidence to Decision (EtD) frameworks, and decision aids. These tools were originally developed by the GRADE working group in the context of a European project called DECIDE. They are part of the GRADE approach, which is a systematic approach to assess and communicate the certainty of evidence (“quality of evidence” or “confidence in an estimate of effect”) and the strength of recommendations. COMPAR-EU uses GRADE to evaluate the certainty of evidence about the effects and will also use it to formulate recommendations.

Summary of Findings tables (SoF)

These tables present the main findings of a review in a transparent, structured, and simple tabular format. In particular, they provide key information concerning the certainty or quality of evidence (i.e., the confidence or certainty in the range of an effect estimate or an association), the magnitude of the effects of the interventions examined, and the sum of available data on the main outcomes.

The SoF tables will be interactive to improve understanding and use of evidence of the effects of healthcare interventions. They allow users to interact with the presentation by viewing more or fewer outcomes, more or less information about each outcome, information about the absolute effects as numbers, words or graphs, cursor over explanations and links to more detailed explanations of basic concepts (e.g., “95% CI”).

Bridging the gap between clinical research and everyday healthcare practice requires more effective communication strategies. With several interactive GRADE based decision making tools COMPAR-EU aims to contribute to narrowing this gap.

Evidence to Decision (EtD) frameworks

EtD frameworks help panels use evidence in a structured and transparent way to inform decisions in the context of clinical recommendations, coverage decisions, and health system or public health recommendations and decisions. EtD frameworks have a common structure that includes the formulation of the question, an assessment of the evidence, and drawing conclusions, though there are some differences between frameworks for each type of decision. EtD frameworks inform users about the judgments that were made and the evidence supporting those judgments by making the basis for decisions transparent to target audiences.

Illustration: Sarah Rosenbaum, Norwegian Institute of Public Health

The frameworks take into account the magnitude of desirable and undesirable effects, stakeholder views on the importance of different outcomes, information on resource use and cost-effectiveness, impact on equity, and other aspects like acceptability or feasibility of the interventions. COMPAR-EU partners are producing the different pieces of evidence that will populate the frameworks; comparative effectiveness analysis via network metanalysis, cost-effectiveness evidence, and contextual factors evidence, helping formulation of recommendations and future implementation of successful self-management interventions.

Using the frameworks, COMPAR-EU panels are being assembled and will formulate clinical recommendations using a population perspective. These recommendations could be then applied (adopted) or adapted to different settings. The frameworks will be particularly useful for decision makers in different settings, as they will be able to review the evidence and the judgments made by the panel, and decide whether to adopt the recommendation (use it directly) or to adapt to their particular setting.

Pablo_Alonso_Coello

Dr Pablo Alonso

Pablo is a senior researcher at the Iberoamerican Cochrane Centre (Biomedical Research Institute Sant Pau). His research is focused on systematic reviews and guideline methodology, with a special interest in incorporating the patients and the public perspective into health care decisions. He is responsible for the Barcelona GRADE center, and a Board member of the GIN and of the GRADE Guidance Group.

Patient decision aids

The project will also develop decision aids to enable comparisons between multiple potential options. The decision aids will include information on the most important outcomes, the certainty we can place on the results of the research results, as well as practical considerations about the self-management interventions being considered (e.g., burden). These tools will be designed for the use in face-to-face clinical encounters or to be used by patients in advance of a clinical encounter. The aids will be produced in six languages (English, French, German, Spanish, Dutch and Greek) using plain language.

All the tools will be available in a web-based platform that is being developed and will be made available in early 2022. The platform will include many other things, but this is something that will rather be revealed in another blog post.

What Works in Implementing Patient Decision Aids in Routine Clinical Settings? A Rapid Realist Review and Update from the International Patient Decision Aid Standards Collaboration

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

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.