Table 4 Exemplars demonstrating contribution of the three data sources to development of the conceptual map of patient empowerment

Ethos

“Empowerment is based on the tenets of self-determination theory, which states that individuals are naturally motivated to improve their own well being”. (McCarley 2009 - Essay) (See Additional file 1)

“Empowerment is also about respecting patients’ rights and voice” (The Lancet 2012 - Essay) (See Additional file 1)

“Promoting autonomous self-regulation so that the individual's potential for health and wellness is maximized” (Quantin 2011 – Review study) (See Additional file 1)

“[Patient empowerment] philosophy is based on the assumption that to be healthy, people must be able to bring about changes, not only in their personal behaviour, but also in their social situations and the organisations that influence their lives” (Holmstrom 2010 – Review study) (See Additional file 1)

“[Patient empowerment] changes the balance within the doctor–patient relationship, making it more democratic in the sense that power is more equally distributed. (Batifoulier 2011 - Essay) (See Additional file 1)

“[Patient empowerment is] based on the assumption that people require psychosocial skills to bring about changes in their personal behaviour, their social situations, and the institutions that influence their lives”. (Lo 2012 - Editorial) (See Additional file 1)

“Self-responsibility for health… understanding that me, myself and I is an important participant in my issues and my health” (Health manager - Interview)

“You put a person with a lung condition in front of a doctor or a nurse and they become a patient… if you really want true empowerment you gave back a bit of the control to the patient” (Patient representative - Interview)

“Patient empowerment is considered philosophy of health care that proceeds from the perspective that optimal outcomes of health care interventions are achieved when patients become active participants in the health care process”. (Bos 2008 - Essay) (See Additional file 1)

“The patients’ role is changing from a patronized patient to an informed patient and further to a responsible, autonomous and competent partner in his or her own care”. (Ammenwerth 2011 – Review study) (See Additional file 1)

“More active role in consultations and health decision making and moving away from the traditional asymmetric power balance inherent in the medical model”. (Bartlett 2011 – Quantitative study) (See Additional file 1)

“I think as we said it’s being satisfied with the service but also on the occasions when you need to be able to make a choice that you have choices available to you within reason” (Patient - interview)

“I just like the idea of being a person who has opinions and is listened to especially when it concerns me” (Patient - interview)

“Empowerment is the authority, the right, yes, your right to be able to take decisions and do for yourself.” (Patient - interview)

Moderators

“Even the most empowered people that I know when going to seek healthcare particularly if something is really seriously wrong with them they’re not interested in making a shared decision” (Health researcher - Interview) [disease characteristics]

“A lot of patients actually go into consultations with a fair bit of knowledge around what their options might be to start with and then really very much down to the clinician’s personality”. (Health researcher - Interview) [health literacy]

“Empowerment means to me that they (patients) are given up-to-date, clinically based evidence and treatment the patient is given by trained practitioners”. (Clinician - interview)

“Health providers will promote empowerment as long as this is in line with their goals, but they will also need training so they know what to do and how to do it” (Experts group)

“Whether or not an organisation is person focused, whether they put the customer right at the centre of the organisation” (Health researcher - Interview)

“I guess it is about what it is important to the government at the time, so if there is an interest in patient empowerment, then people are more likely to access empowering interventions” (Experts group)

Interventions

“The capacity-building process whereby individuals increase their belief that they play an active role in their care (ie, taking action to solve their problems)”. (Alegria 2008 – Qualitative study) (See Additional file 1)

“A social process of recognising, promoting and enhancing peoples’ abilities to meet their own needs, solve their own problems and mobilise the necessary resources in order to be in control of their lives”. (Hiley 2008 – Mixed methods study) (See Additional file 1)

“Motivational interviewing well as a health professional you are trying to get a sense of what somebody’s about and help them to understand what they are about themselves so that that can be taken into consideration”. (Clinician - Interview)

“Another facet to patient empowerment which has been tried in numerous general practices in the formation of patient participation groups. And that’s um really left as a clinical empowerment but more geared towards getting patients to have a say in the running of a General Practice”. (Health manager - Interview)

“The relationship issues can be part of empowerment so you go to see the GP and the GP is kind of supportive and positive and doesn’t undermine the patient’s efforts then the patient may come out feeling empowered” (Health researcher - interview)

“As for health system interventions, we should consider the Expert Patient Programme, and what people are achieving through that in terms of empowerment” (Experts group)

You’re giving them the wherewithal, the tools necessary to take rational decisions, to understand and to act upon advice” (Patient - interview)

Things patients do

Patients’ capacities

Outcomes

Indicators and Outcomes

“Empowering patients can enable them to take more responsibility for managing their health and encourage self-management activities”. (Alpay 2010 – Review study) (See Additional file 1)

“Patients […] manage their own condition and feel like they have got the ability and are given confidence to be able to manage their condition” (Health provider - interview)

“WHO has described empowerment as a “prerequisite for health” and “a proactive partnership and patient self-care strategy to improve health outcomes and quality of life among the chronically ill” (Ayme 2008 – Review study) (See Additional file 1)

“Empowerment reflects a type of support that enables and motivates people to take the necessary steps to manage and improve their health in a self-directed manner”. (Bann 2010 – Mixed methods study) (See Additional file 1)

“People obtaining the knowledge and skills to make it possible for them to become active partners, with professionals, in making informed decisions and choices about their own treatment and care”. (Boudioni 2012 – Quantitative study) (See Additional file 1)

“Process of change in which patients positively reach a new perspective by reconceptualising and reinterpreting their disease”. (Hagiwara 2011 – Review study) (See Additional file 1)

“Patients […] manage their own condition and feel like they have got the ability and are given confidence to be able to manage their condition” (Health provider - interview)

“Helping people to discover and use their own innate ability to gain mastery over their disease or status”. (Topac 2011 - Essay (See Additional file 1))

“It’s very important for doctors to empower patients to make sure they’ve got information, make sure that they’ve got strategies for dealing with their condition so it minimises the impact of it on their quality of life”. (Patient representative - interview)

“More active role in consultations and health decision making and moving away from the traditional asymmetric power balance inherent in the medical model”. (Bartlett 2011 – Quantitative study) (See Additional file 1)

“[Patient empowerment is] an individual trait, characterized by an emphasis on increased individual control over the different aspects of one’s life” (Oh 2012 – Quantitative study) (See Additional file 1)

“[Empowerment is] a process of personal transformation”. (Falcao-Reis 2010 - Essay) [43]

“The capacity-building process whereby individuals increase their belief that they play an active role in their care (ie, taking action to solve their problems)”. (Alegria 2008 – Qualitative study) (See Additional file 1)

“An individual’s discovery (and development) of their inborn capacity to control and take responsibility for their lives”. (Petersen 2008 - Essay) (See Additional file 1)

[patients] have expertise in how their condition affect them and I think medical professionals it’s vital that they acknowledge that expertise […] part of patient empowerment is the medical professional respecting that expertise and trying to use that and draw on that as a resource… I think the other part of it is the medical professional using their skills and their knowledge um to help the patient learn new strategies, new techniques and develop their own knowledge so that they’re better equipped to care for themselves. (Patient representative - interview)

“I think it’s just really useful to talk and share, share your experiences with other people and then you listen to them”. (Patient - interview)

… it’s a matter of whether the interaction with the person or system you just had um not just identifies the problem […] you’ve got […] gives you treatment but makes you feel more confident, capable of […] dealing with it…. (Patient - interview)

“It’s not people telling me what I need. It’s me telling them what I need” (Patient - interview)

… encouraging patients to um attain a greater health literacy so that they can manage their chronic disease better themselves. That they know when to seek help, they know how to self-manage and that will improve their outcomes. […] knowing what services to access and when. So a better self-reliance in terms of managing minor illness … (Patient - interview)

You’re giving them the wherewithal, the tools necessary to take rational decisions, to understand and to act upon advice” (Patient - interview)

… having sufficient information to give you confidence to make a decision to the best of your abilities whatever those are and those obviously will vary from person to person… People who understand their lung condition a bit better are often the ones who are confident to actually make some choices themselves in a more able way. (Patient representative - interview)