EPF Congress on Patient Involvement

The first ever European Congress on patient involvement provided an exceptional opportunity for dialogue and engagement with a wide range of health players who aspire to make patient involvement a reality. At the event on 12 – 14 November in Brussels, it was explored why patient involvement leads to better outcomes for patients and society, and how patient involvement can be achieved in practice across Europe.

We interviewed a patient who highlighted that there are three key elements of successful patient self-management:

  • The patient knows what is expected
  • The patient agrees with what is expected
  • The patient must be able to follow the plan. Both, in actions and financiall

The event offered the great opportunity to discuss our approach on patient involvement in COMPAR-EU.

Fun fact: The stairs of the venue attract to use them: They were marked with the number of calories you will lose while climbing the stairs.

Extensions of the probabilistic ranking metrics of competing treatments in network meta‐analysis to reflect clinically important relative differences on many outcomes

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.

The role of general practitioner to empower patients in their self-management

General practice is an academic and scientific specialisation with its own educational content, research, evidence base and clinical activity. It´s a clinical specialty that is based on primary care. The European definition of general practice by WONCA EUROPE (The European Society of General Practice/ Family Medicine) describes the key features of the discipline, and the role of the general practitioner (GP), as well as the core competencies of the GP. The features of our speciality include developing a patient-centred approach, orientated to individuals, their families and communities, and promoting patient empowerment.

For the past 25 years, I’ve been working as a GP in the Infanta Mercedes Primary Care Health Centre in Madrid, close to the Santiago Bernabeu Stadium of Real Madrid Football Club. To be honest, I don’t like football very much. As a GP, I deal with people and their problems in the context of their life circumstances. I don’t see them as the owners of impersonal pathologies or just “cases”. I think that the starting point of every health care process is the patient himself/herself. To understand the way a patient faces his/her health issue is as important as the dealing with the illness itself. Having been working for many years side by side with this patient’s dimension, my conclusion is that the common ground for all of us should be each person’s beliefs, fear, needs and expectations, in order to be not only more successful but also to perform better as humans.

The three key dimensions of patient empowerment are health literacy, self-care and shared decision-making.

Promoting patient empowerment in a primary care centre

Most of my patients lack self-care, that means they don’t know how to stick to life behaviours in favour of their own health in order to reach a well-being level that can be considered optimal. Another problem is having low health literacy, the degree to which people have the ability to obtain, process and understand basic information about their health and health services, in order to make appropriate decisions. Both are very important in people’s health.

As a GP I may be holding a strategic position when it comes to promote patient empowerment and self-management in my daily clinical practice. In my view, the starting points for a continuous educational process are both the multidisciplinary approach, the strong relationship based on a unique consultation process and the trust between the health care professional and the patient. That’s how we will be able to empower our patients, by knowing that the three key dimensions of patient empowerment are health literacy, self-care and shared decision-making.

Director of the Program of Preventive Activities and Health Promotion at the Spanish Society of Family and Community Medicine (semFY) & Professor of Family Medicine at Universidad Autonoma Madrid

Dr Francisco Camarelles Guillem

Francisco works as a General Practitioner in Madrid and he is interested in Preventive Activities and Health Promotion. He is a member of the Spanish Society of Family and Community Medicine (semFYC). semFYC is a featured member of WONCA EUROPE (The European Society of General Practice/ Family Medicine).

The challenges of shared decision-making and patient activation

Two main challenges I have to face in my daily business as a GP are the shared decision-making process and the patient “activation” procedure. As for the first one, when it comes to making decisions, it is crucial that the conversation between doctors and patients is as honest as possible, and that both parties realise they are involved into a thinking, feeling and discussing about a situation which will have consequences on both sides. On the other hand, activating my patients in they self-care is not so easy. Patient’s activation is related to knowledge, skills and confidence, so each one can manage his or her own health.

We know what strategies are used by health professionals who are good “activators” of the change in health behaviour of their patients. Mainly, there are five strategies which have been proven most successful in enabling patients to change their lifestyle: emphasizing patient responsibility, collaborating with patients, identifying small steps towards change, scheduling frequent follow-ups, and showing interest.

It is also interesting to know which less successful strategies are being used by other professionals. Highlighting those descriptions of the negative health outcomes to be expected if unhealthy behaviours are not faced: “If you do not stop drinking alcohol, your liver will end up having a cirrhosis disease.”

G-I-N & JBI Conference 2019

This year´s theme of the conference that was organised by the Guidelines International Network in partnership with the Joanna Briggs Institute (JBI) was “Trustworthy Evidence For Questions That Matter – The value of guidelines in 21st century healthcare”. It was an interesting event relevant to all healthcare professionals and anyone with an interest in addressing evidence-practice gaps by promoting best practice and improving the quality and safety of health care.

Our partner IR-HSCSP presented two posters:

  • How to compare the (cost-)effectiveness of self-management interventions: using network meta-analysis to include both direct and indirect assessments of multiple treatment options
  • Development and external validation of a comprehensive Taxonomy of self-management interventions in chronic onditions: the COMPAR-EU taxonomy.