Background
Methods
Scoping literature review
Interviews with key stakeholders
Topic | Question | Probes |
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Patient outcomes | 1) What difficulties have you (or the people you represent) experienced in your/their everyday/family life due to this condition? | - What were you/they not able to do in your/their day-to-day life because of the condition? |
2) If you think about a time when you (or the people you represent) used the primary care service, what benefits did they get from this? | - How did the condition limit what you/they could do, and how did the care you/they received make a difference to that? | |
3) What do you think people are looking for when they see the GP/use primary care services? What do they want to get out of it? | - In what way(s) was your/their life improved afterwards? | |
- What helped you/them to get what you/they needed/wanted? | ||
- What prevented you/them them from getting what you/they needed/wanted? | ||
4) Has anything changed for you/your family/the patients you represent as a result of your/their use of primary care services? | - Can you say more about what those improvements are? | |
5) Are there any ways in which your life/your family life/the family lives of the patients you represent became more difficult following your/their use of primary care services? | - Can you say more about what those difficulties are? | |
Patient empowerment as a measurable outcome | 6) What does the term “patient empowerment” mean to you? | - Please describe health interventions or health services that promote patient empowerment. |
7) Would a patient questionnaire capturing the degree of patient empowerment be useful to assess the quality of primary care services? | - What sorts of practical things would make it hard to use a patient questionnaire capturing patient empowerment effectively to assess the quality of primary care services? | |
- What sorts of practical things would support use of such a questionnaire? |
Topic | Question | Probes |
---|---|---|
Patient outcomes | 1) What do you think people are looking for when they see the GP/use primary care services? What do they want to get out of it? | - What helps patients to get what they need/want from primary care services? |
- What prevent patients from getting what they need/want from primary care services? | ||
2) What patient reported outcomes do you think are useful to assess quality in primary care? | - How is it measured at the moment? | |
- Are these approaches effective? | ||
- Are there any other measures that could be be considered? | ||
Patient empowerment as a measurable outcome | 3) What does the term "patient empowerment" mean to you? | - Please describe health interventions or health services/approaches that promote patient empowerment. |
4) Would a patient questionnaire capturing the degree of patient empowerment be useful to assess the quality of primary care services? | - What sorts of practical things would make it hard to use a patient questionnaire capturing patient empowerment effectively to assess the quality of primary care services? | |
- What sorts of practical things would support use of such a questionnaire? |
Critique by Cochrane Healthcare Quality Research Group, Cardiff University
Results
Synthesis of the literature
Author | Definition | Cited by % |
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Funnell et al. | “We have defined the process of empowerment as the discovery and development of one’s inherent capacity to be responsible for one’s own life. People are empowered when they have sufficient knowledge to make rationale decisions, sufficient control and resources to implement their decisions, and sufficient experience to evaluate the effectiveness of their decisions. Empowerment is more than an intervention or strategy to help people make behaviour changes to adhere to a treatment plan. Fundamentally, patient empowerment is an outcome. Patients are empowered when they have knowledge, skills, attitudes, and self-awareness necessary to influence their own behaviour and that of others in order to improve the quality of their lives”(Funnell et al., 1991). “Empowerment is a patient-centered, collaborative approach tailored to match the fundamental realities of diabetes care. Patient empowerment is defined as helping patients discover and develop the inherent capacity to be responsible for one's own life” (Funnell & Anderson, 2004) | 11 % |
Aujoulat et al. | “Empowerment may be defined as a complex experience of personal change. It is guided by the principle of self-determination and may be facilitated by health-care providers if they adopt a patient-centred approach of care which acknowledges the patients’ experience, priorities and fears. In order to be empowering for the patient, therapeutic education activities need to be based on self-reflection, experimentation, and negotiation so as to allow for the appropriation of medical knowledge and the reinforcement of psychosocial skills”. (Aujoulat, d’Hoore, & Deccache, 2007) | 6 % |
Anderson et al. | “… The empowerment approach as a method for helping patients select and make changes in their diabetes self-management. This approach is based on the principles of counselling, and educational psychology, nursing and behavioural theory, and the reality of day-to-day management of a chronic disease such as diabetes”(Anderson & Funnell, 2002). “The empowerment process is regarded as an individual’s discovery (and development) of their inborn capacity to control and take responsibility for their live”(Anderson & Funnell, 2005). “Patient empowerment is a process designed to facilitate self-directed behavior change…The empowerment approach involves facilitating and supporting patients to reflect on their experience of living with diabetes. Self-reflection occurring in a relationship characterized by psychological safety, warmth, collaboration, and respect is essential for laying the foundation for self-directed positive change in behavior, emotions, and/or attitudes”(Anderson & Funnell, 2010) | 6 % |
Lau | “Patient empowerment in the health care context means to promote autonomous self-regulation so that the individual’s potential for health and wellness is maximised. Patient empowerment begins with information and education and includes seeking out information about one’s own illness or condition, and actively participating in treatment decisions”(Lau, 2002) | 5 % |
Gibson | “Empowerment is a social process of recognizing, promoting and enhancing people’s abilities to meet their own needs, solve their own problems and mobilize the necessary resources in order to feel in control of their own lives. Even more simply defined, empowerment is a process of helping people to assert control over the factors which affect their health”(Gibson, 1991) | 5 % |
Patient level | Health professional level | Healthcare system level | |
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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)
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“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)
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“I just like the idea of being a person who has opinions and is listened to especially when it concerns me” (Patient - interview)
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“Empowerment is the authority, the right, yes, your right to be able to take decisions and do for yourself.” (Patient - interview)
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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]
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“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)
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“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)
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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)
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“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)
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“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)
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“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)
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You’re giving them the wherewithal, the tools necessary to take rational decisions, to understand and to act upon advice” (Patient - interview)
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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)
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“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)
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“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)
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… 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)
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“It’s not people telling me what I need. It’s me telling them what I need” (Patient - interview)
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… 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)
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You’re giving them the wherewithal, the tools necessary to take rational decisions, to understand and to act upon advice” (Patient - interview)
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… 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)
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Interviews with key informants
“If you went to a group of people and said ‘how can we empower you?’ I think they might look at you as if you were a bit mad really because I think even most intelligent group of patients would wonder what the definition of that is. It’s interesting because you started off asking me what I thought empowerment was almost so I think there’s in my experience there’s lots of different definitions to that”.
“Self-responsibility for health… understanding that me, myself and I is an important participant in my issues and my health” (Health manager)
“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)
Synthesis: components of the emergent conceptual map of patient empowerment
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Hypothesis 1: Empowered patients will report higher levels of self-efficacy, sense of meaning and coherence about their condition, health literacy, perceived control and feeling respected by their healthcare providers.
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Hypothesis 2: Empowered patients, those scoring high on indicators of the variable “state” patient empowerment, will have better self-reported outcomes e.g., (a) be better adapted to their condition; (b) have improved quality of life; (c) report higher levels of well-being and satisfaction with life; (d) achieve some independence relating to their healthcare.
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Hypothesis 3: There is a dual reciprocal relationship between patient empowerment activities or behaviours (things patient do) and patient empowerment capacities, beliefs or resources. For example, patients who use the internet to collect health information may have improved health literacy and patients with high levels of health literacy may make more informed decisions about their health.
“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)
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Hypothesis 4: There are dual reciprocal causal relationships between patient empowerment indicators, patient outcomes and clinical outcomes.