Criteria for Judging the Quality of Patient Decision Aids

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.

Testing and implementing self-management programs: new approaches needed in Health Technology Assessment and Health Policy

Self-management programs and tools put our traditional way of evaluation and decision-making to a challenge. The traditional research and policy models usually use the example of relatively straightforward interventions, like drugs, to illustrate the importance and practice of what they do. But how must new research techniques look like to meet current challenges?

Old school HTA models offer a simple match of evaluation and decision-making. During the last two decades, however, it appeared that one size doesn’t fit all; usual techniques in research and policy don’t fit anything at all. The HTA (health technology assessment) community encounters all sort of problems due to all sort of complexities and reacted on those challenges inventively, by developing and testing new research techniques and new modes of interaction with policy and practice. How do these challenges look like? And how did researchers and policy makers react? The key word is: interaction. And interaction is easier said than done. It requires a new attitude of all parties in the Health Care arena.

It starts with attitudes, and the only one who can do this is: me. For anyone counts: it starts with me.

Reality puts the rational model of Health Technology Assessment to a challenge

For those interested in policy science: HTA (Health Technology Assessment) once was a typical example of the rational policy model. You start with formulating decision criteria for coverage decisions (like safety, effectiveness, cost-effectiveness); you perform some dedicated research (assessments of the technology) to answer the questions raised by your criteria, and you end up with clear-cut yes-or-no decisions, totally guided by the results of your assessment. However, reality puts the rational model to a challenge, in every aspect. To mention some interesting problems: how do we define which sort of effects are essential to patients, to doctors, to the community (which pays for it)? What to choose in case of divergence? Is there a universal, generally accepted measure and threshold for quality of life aspects? What about cost: what types of cost are to be reckoned with and is there a maximum for cost? May be… also a minimum, are certain technologies too cheap to cover, or do they really meet the definition of health care? How do we involve all relevant parties in the arena, to start with patients, but also industry, taxpayers, health care professionals; and how do we integrate the different perspectives and interests of all those involved? Do we get our study results in due time? What to do if not: conditional reimbursement? And finally: how to evaluate complex, composed programs and how do we account for quick developments in the technology itself, and in the way professionals and patients behave and learn? Can we really ascribe effects to specific elements of the program (devices, communication, user capacities)?

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Dr Bert Boer

Dr Bert Boer is a Professor Emeritus in Policy and Research for Health Care Coverage, Erasmus University, Rotterdam. He investigates and teaches contents, procedures, criteria, policy implications of Health Care coverage decisions. Until 2015 he was Executive Member of the Board of the National Health Care Institute in the Netherlands.

Interactivity requires new attitudes

I have a strong conviction: all parties involved have to look out of their own window (be aware of their specific view on things) into the garden (knowledge, interests, values) of the other ones, ask questions and listen to the answers with an open mind. Interactivity is needed between patients and doctors, professionals and policy makers, researchers and HC providers, patients and taxpayers. Surely, we need new policy instruments and regulations, we need new research techniques, we need new organisational skills of professionals and providers, but all that won’t help if we do not learn, listen, leave our silos and bubbles: it starts with attitudes, and the only one who can do this is: me. For anyone counts: it starts with me.

Therefore, it seems that if we want to take advantage of the potential benefits and advantages of apps for self-management, we need to tailor those apps to the circumstances of the people using them. And there is still much to learn on the specific circumstances in which the self-management apps work best and how to sustain it overtime. COMPAR-EU aims to contribute in this area by performing sub-group analysis on the effectiveness of app-based self-management interventions to help identify precisely those areas of success, contributing to expand them across Europe.

Moving Measurement into Action: Designing Global Principles for Measuring Patient Safety

Today, 5th of September, a new Salzburg Global Seminar program “Moving Measurement into Action: Designing Global Principles for Measuring Patient Safety” begins. Around 50 health care leaders from across the world will convene in Salzburg to help design global principles for measuring patient safety. The program is held in partnership with the Institute for Healthcare Improvement (IHI) and is part of Salzburg Global’s Health and Health Care Innovation multi-year series. Additional support comes from the Gordon and Betty Moore Foundation and the Mexican Business Council Fellowship Program. Researchers, design thinkers, patients, providers, and experts in measurement and patient-safety will develop an actionable, cross-continuum framework for safety measurement.

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