“All about the money?” A qualitative interview study examining organizational- and system-level characteristics that promote or hinder shared decision-making in cancer care in the United States

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.

Fostering Shared Decision-Making through the use of Electronic Health Records

Shared decision-making (SDM) in healthcare is considered a gold standard for supporting the cooperation of physicians and patients. Despite various positive outcome-relevant effects, the practice of engaging patients in their healthcare decisions is infrequently implemented in routine care. In addition to some system-level characteristics there are organizational characteristics that influence SDM implementation. One strategy focusing on the organizational level to support SDM is the use of electronic health records (EHR).

SDM is a process by which a healthcare provider and a patient jointly make a health decision after discussing different treatment options, their potential benefits and health risks, and considering the patient’s values and preferences. This process is challenging when patients lack information about their health problems and the pros and cons of various treatment options. Acknowledging and supporting the patient resolves this barrier and can help foster an informed, shared decision about the best disease management strategy.

By ensuring that the patient is well informed, he or she can better participate in a shared decision-making process with the physician.

Providing reliable and evidence-based health information

National health information portals, provided by government funded organizations, have an excellent opportunity to be a central point of contact for health issues. Such portals can support patients in making informed decisions by providing reliable and evidence-based information. In countries like Denmark and Austria, the EHR is connected to health information portals. This connection offers the potential to interlink general health information with patients’ individual health data along their course of treatment. By clicking on an “info” button displayed with the patients’ health data (e.g. laboratory results), the patient is directed to corresponding, easily understandable information within the health information portal. In the same way, it would be of great benefit if the entry of a specific diagnosis in an EHR is linked with disease-related information recommended by physicians. This information should also include decision aids that facilitate patient participation in healthcare decisions by providing information about the treatment options and their associated outcomes (benefits and harms). This allows patients to review possible options by clarifying personal values. By ensuring that the patient is well informed about his/her disease and the different treatment options, the patient can better participate in a shared decision-making process and take more responsibility for his/her health.


Nina Adrion

Nina has a background in Health Economics and works at OptiMedis in different national and EU projects with a particular interest in shared decision-making. As a Research & Innovation Manager, she is also an expert in developing and implementing innovative healthcare programs.

The use of EHR in the SDM process

An EHR can support SDM at every stage of the process. Lenert et al. discuss a four-phase conceptual model to integrate the SDM process into clinical workflows. A possible process might look like this: In the first phase “Initiate SDM”, EHR can use an alert system when there is a context for preference sensitive care. In that way, the EHR alert helps a provider recognize and respond to a context requiring SDM. In the second phase “Discuss Options”, the provider can use the EHR to send an order for the use of a decision aid (that might be provided by the health information portal including further disease-specific information, see above). The patient receives a reminder showing that he/she has a task to complete in his/her patient portal account. This can be done either during a patient visit or at home, with other family members if desired. After filling out the decision aid including a value clarification exercise, the data would be presented back to the provider. In the third phase “Make a Decision”, the provider can access the results of the patient´s preferences of the different treatment options. After that, the patient and the provider together deliberate on the best option for care. In the last phase “Monitor & Follow-up”, so called “agents” that run within an EHR can detect situations where treatment conflicts with patient preferences. Hereby, ongoing monitoring of care can ensure treatments are consistent with patient´s preferences.

Nevertheless, it is particularly important to emphasize that EHR should not replace the doctor-patient interaction but facilitate this interaction by providing information in a timely manner.