IPPOSI CEO Derick Mitchell delivered this presentation entitled 'Outcomes of relevance to patients' at the first National Healthcare Outcomes conference in the Royal College of Surgeons, Ireland in February 2018
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Healthcare Outcomes Conference, RCSI, Feb 2018
1. February 20th, 2018
PATIENTS – SCIENCE – INDUSTRY
National Healthcare Outcomes Conference, RCSI
Outcomes of relevance to patients
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Are we measuring things that Irish
patients are interested in?
“Our most cruel failure in how we treat the
sick and the aged is the failure to
recognise that they have priorities beyond
merely being safe and living longer.”
Atul Gawande,
Surgeon, Writer, Public Health Researcher
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My talk
• IPPOSI
• What matters to patients re: health outcomes in healthcare
• Harnessing the power of Patient Registry, Narrative, Experience
Data
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In a changing system - the two loops theory
Trailblazers
Protectors
Firefighters
Illuminators
Platform
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IPPOSI? Who?IPPOSI
A patient-led organisation
that works with patients,
government, industry,
& science to put patients at
the heart of health innovation
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Public Private Partnership
IPPOSI Board: Grant from Department of Health
(via Health Research Board)
Industry membership fee
Project Funding
8 Patient Organisations
6 Scientific Members
6 Industry Members
2016/2017 Board
FUNDINGLEADERSHIP
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Patient-led activities
Health Hacks
Workshops
Consultations
Round-tables
Working Groups
Summer Schools
Conferences
Clinical Research
Health Information
Patient Data
Health Economics
Biosimilars Policy
Dynamic Consent
Data Protection
Rare Diseases
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Where IPPOSI wants to get to…
INFORM ENGAGE EMPOWER
Where IPPOSI is at…
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What matters to patients?
• We want person-centred, coordinated
healthcare
• people having control and influence in decisions that
affect their health and care
• We want people to be partners in
• the design of services
• research, innovation and improvement
• building real world effectiveness data
That the patient voice is listened to AND ACTED
UPON
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What matters is what gets measured…
• Health stakeholders take decisions based on evidence, not on (our)
anecdotes
• Cost-effectiveness is key. Prove that the informed patient is cost-
effective…..!
• National registries are often only collecting stats on process measures
• Collect & assess Health-related QoL measures routinely in Ireland
• Patient organisations are well-placed to generate patient-relevant data
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Realising full potential of patient registries
• 109 ‘national data collections’ (HIQA, 2014)
• Under Health Info Bill, Minister will be able to insist that people mandatorily return
to a limited number of gold standard registries
• Current challenges are stark:
• Patient consent
• Data Management
• Governance
• Cost of capturing data
• Sustainability
Slide courtesy of Abigeal Jackson,
CF Registry of Ireland
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International Pressure
OECD Health ministers commit to patient
reported measures of performance
“We need to invest in measures that will help us
assess whether our health systems deliver what
matters most to people”
ICHOM
ICHOMs purpose is to transform health care
systems worldwide by measuring and
reporting patient outcomes in a standardized
way
OECD Health Ministers. The next generation of health reforms: ministerial statement. Feb 2017.
http://www.oecd.org/health/ministerial/ministerial-statement-2017.pdf
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PROMs, PPMs, PREMs, PAMs,..
• Delivering high value for patients should be the main
goal of health‐care delivery
• Using patient-centered outcomes to establish value of
healthcare in Ireland:
• PROMs, PREMs, PPMs must be a good reflection of what
patients regard as important
• Failing to improve on aspects of care which are important to
patients may negate the value that use of PROMs, PREMs,
PPMs add
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Frameworks of Patient Involvement
2008 - National Strategy for Service User Involvement in
Health and Social Services (DoHC & HSE)
---------------------------------------------------------------------------
2016 - Values in Action, QID Cultures of Person-centeredness (HSE)
2016 - Mental Health Local Recovery Groups (HSE)
2017 - National Patient Experience Survey - Hospitals (HIQA, HSE, DoH)
2017 - National Clinical Effectiveness Committee – PPI Values (DoH,
NCEC)
2017 – Personas for Electronic Health Records (eHealth Ireland)
2017/18 - Patient Narrative Project on Person-centered care
(CSPD-HSE, IPPOSI)
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The Patient
Narrative
Project
Reference: Phelan A., Rohde D., Casey M., Fealy G., Felle P., Lloyd H. & O’Kelly G. (2017) Patient
Narrative Project for Person-Centred Co-ordinated Care. UCD, IPPOSI & HSE, Dublin.
Phases 1 + 2 + 3:
Person-centered,
co-ordinated care
18. Person centered co-ordinated care
Phase 1 (2017)
What people in Ireland want to experience
during their care when they require a
number of health services at one time or
over time
Phase 2 + 3 (2017, 2018-)
A framework that will hear peoples’
experiences of using more than one health
service at a time
11 Focus
Groups
2 Online
Surveys
4 Regional
Workshops
Output: Statements (19) + Definition (1)
Survey +
System
Partnerships
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Definition of Person-Centred Co-ordinated Care in Ireland
“Person centred co-ordinated care provides me with access to and
continuity in the services I need when and where I need them. It
is underpinned by a complete assessment of my life and my world
combined with the information and support I need. It respects my
choices, building care around me and those involved in my care”
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Themes Emerging
From Phase 1
My
healthcare
experiences
Healthcare
I am
confident in
My journey
through
healthcare
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My Journey through Healthcare
• My care includes issues that my health influences, such as
finances, housing, employment, ability to travel and access to
transport.
• I have services delivered by the most suitable healthcare staff in
the correct setting and when I need them.
• I can have one person who will oversee and follow up on all my
care.
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• Survey remains live
• Proof-of-Concept – paper, online, app-based
• Producing data on patients’ experience of care when they use
more than one health service
• Target:
• 1000 stories nationally, particularly in relation to older people and
people with chronic conditions
• Channel through Integrated Care Programmes HSE
25. Your Voice Matters: Influence
Story Migration
What needs to change so that
there are more stories in the
centre of this triangle?
• Co-ordination
• Care-planning
• Communication
• Partnership
28. At end of 2017… By end of 2018…
A ‘tried and tested’ framework
• To hear a high volume of patients’
experiences through the online
survey
• To use data to influence service
design, delivery and improvement
of integrated care
• A qualitative and quantitative
evaluation of POC within the
context of the HSE
Integration into ‘business as usual’
• Framework (incl. resource
implications) to be integrated into a
‘business as usual’ model
• Quality and Patient Safety Structures
at CHO level will be essential
• QID publication: ‘Quality and Safety
Committees; Guidance and resources’
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Applications – Patient Portal
• Healthlink - National Message Broker
• Healthmail - National Secure Clinical Email
Solution
• Integration with building blocks for national
Electronic Health Record
• Innovation - development of MyHealthPortal
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Applications – Personalised Medicine??
Right treatment, Right time, Right patient
at the right location, by the right provider, at the right cost
Minimally Disruptive Treatments
• Impact on clinical trial design
• Impact on clinical guidelines
• Impact on clinical practice
• Impact on service delivery, coordination
V-T Tran et al. (2015) Taxonomy of the burden of treatment:
a multi-country web-based qualitative study of patients with
chronic conditions BMC Medicine 13:115
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Integrated, accountable care systems?
• Person-centered care cannot currently be
adequately measured in Ireland
• If PCC is to become mainstream practice, and
be seen to be achieved, common measures
need to be developed
• Strategic review and overhaul of measures of
PCC across health and care, based on
common outcomes and patient experience /
narrative
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In summary
• Patients are inherently innovative and willing to work in partnership
• relationship is fragile, dynamic, uncomfortable, ambitious, and goal-
oriented
Growing body of evidence:
• Person-centred approaches are important for ensuring the overall
quality of care and for improving health and wellbeing outcomes
• Activated / empowered / informed patients have better health
outcomes
Reliance on mortality rates and clinical indicators gives only a partial view of the value of health care.
What people really care about is its impact on their wellbeing and their ability to play an active role in society, so that’s what we should be measuring.
And, of course, the only way to do this is to ask patients themselves.
Ireland’s healthcare system has undergone a series of reforms since the 1990s to the extent that it was characterised by the European Health Observatory as “in a process of constant review” ever since.1
A patient-led platform that provides a structured way of facilitating interaction between patients, government, industry, science and academia to put patients at the heart of policy and medicines development.
as patients, carers and members of communities
building real world effectiveness data – for example - following a decision of conditional reimbursement, incorporating patient relevant outcomes.
Although we are measuring loads of stuff in healthcare, we are not measuring the things that our patients are interested in. We can tell you a lot about the number of patients on waiting lists, but we can’t tell you what an Irish patient with prostate cancer wishes to get out of his treatment. Will he survive to see his first grandchild graduate? Will he be able to return to work or his favourite sport? Will he suffer incontinence or bowel trouble? Will his relationship be affected by sexual dysfunction? Although these are the obvious things we should be tracking, we are not. Why? Because we never took the time to agree common measuring scales on the stuff which matters to patients.
Implement healthcare in a way that directly addresses patient's needs and preferences and supports those goals most important to improving quality, health, and value.
NCR: completeness of medical records, percentage of patients receiving treatment, incidence and mortality rates, demographics
The effective use of data, and its access, interoperability and compatibility are critical factors for realising the full potential of patient registries.
The value of patient registries to patient organisations is obvious, whether it is helping to attract research, inform service planning, lower the cost of treatments, or improve patient outcomes. Against this, the challenges of creating patient registries are stark – patient consent, data management, governance, the cost of capturing data
the most fundamental question: what information, if you had it available, would dramatically change health practice/research in this country?
HIQA made recommendations to the Minister of Health in 2014, identifying three key challenges facing national data collections in Ireland:
The absence of a strategic framework and any national oversight for national data collections
The need for standardisation and improvement in data quality
The use of information, which is not being optimised
Registries are possibly viewed in the wrong way. Rather than niche scientific experiments, they should be seen as projects that naturally lend themselves towards collaboration. They group the people required join the dots between health services, help identify processes that can maximise use of data & provision of services & develop interoperable datasets.
So, in many ways, seeing our health service as a series of registries could create a framework for an effective and inclusive EHR that could evolve (rather than be parachuted on to us) and deliver population level data that facilitates clinical care, science & innovation
This groundbreaking ministerial statement endorsed plans for a major programme of work on patient reported indicators of health system performance.2 Patient Reported Experience Measures (PREMs) and Patient Reported Outcome Measures (PROMs) seem set to become the new currency for comparative performance assessment, but they may have an even more important role in clinical care.
Patient experience surveys elicit feedback on the process of care rather than its …
In 2016 the International Consortium for Health Outcomes Measurement (ICHOM) met for the fourth year in succession, and 800 excited delegates heard the collective brains of Harvard and the Karolinska confidently announce that we have cracked the code on this.
Healthcare can be fixed if we listen to our patients, define the outcomes they wish to achieve, measure them globally on the same standardised scales and calculate the costs of attaining these outcomes, disease by disease, so we can calculate value.
This will transform healthcare, and drastically reduce costs (Porter estimates by as much as 20-30 per cent, which would to amount to €5 to €6 billion in Ireland alone.) It would put the patient back at the centre of everything we do. Not a bad result.
Patient outcomes must be included because delivering high value for patients should be the main goal of health‐care delivery.10, 11
There is a growing body of evidence that person-centred approaches are important for ensuring the overall quality of care and for improving health and wellbeing outcomes
”What matters” may not fit ”neatly” into health care thinking
Firstly, research suggests that publicizing health‐care performance results leads to a focus on low scoring aspects of performance in quality improvement efforts.20
At first glance this would be something to encourage. However, in the case of PROMs this assumption would only be true if the PROMs are a good reflection of what patients regard as important.
In other words, patients should be involved throughout the development, ensuring that PROMs truly reflect the patient's perspective.
However, a scoping review of 193 PROMs, suggests that patients are not always involved in PROM development.21
Providers may improve some aspects of care, but may neglect other aspects which are important to patients.
Patient outcomes are increasingly measured using patient‐reported outcome measures (PROMs).3, 4, 13, 14
PROMs use the patient as a source of information on health outcomes such as quality of life.3, 15
Including patient‐reported outcomes is important, as some questions about health care can only be answered by patients.16
Additionally, patients offer a different view on outcomes,17 and patients are becoming important stakeholders in health care.18, 19
PPMs
While patient preference methods are related to PROs, health related quality of life and the expected-utility methods used to motivate quality adjusted life years (QALYs), they are also a distinct class of methods that are increasingly being applied in medicine [1].
Patient-reported HRQoL methods are concerned with measuring the patient's status along several aggregate domains (for example, mental, physical, functional, social, and emotional domains). Outcomes in a given domain are focused on attempting to identify a given state of being (albeit with bounds set a priori by the researcher) and are less focused on attempts to identify or value how the respondent feels about being in that state of health;
Patient preferences are concerned with measuring the patient's value for a specific component, or attribute, either in absolute terms or in relation to another attribute. The relative importance is identified by choices that inevitably require trading off one or more desirable outcomes (including price/co-payment) in a given area (or domain) in order to obtain a more desirable composite outcome.
Person‐centred approaches recognize that a patient is a person with specific needs, preferences, values
PROMs only reflect the overall patient population
Usually only the aspects which are considered important by most patients are included
more uncommon symptoms or complaints are often neglected
Individual patients may differ in the importance they attach to different outcomes.12, 23 For example, an 80‐year‐old patient living in a nursing home may be less interested in being able to perform physically demanding functions such as running than an active 60‐year‐old patient.
Measuring and interpreting health outcomes as if patients regard the measures as equally important may not give an accurate view of how patients perceive the quality of their care.
Context is how do you transform services towards what people want, when they want them.
Listening exercise – first time we had patients identifying their needs, and communicating back to HCPs
Response rate of 51% shows the willingness to have patient voices heard
Majority of patients have confidence in the HCPs that treat them
83% of patients were treated with dignity and respect
96% of patents felt that their hospital ward was clean
Journey into the hospital is not as good, hard to recover
Issues with discharge – 40% had a bad experience – a lot based on communications and information – can be fixed
The Clinical Strategy & Programmes Division of the HSE initiated the Patient Narrative Project to partner with users of healthcare services in the design and delivery of these services.
The Patient Narrative Project is a three phase project to progress to partnership working
listened to the experiences of people who have had to use multiple health services over time or at one time and through the words of the service users and caregivers developed a set of statements that clearly articulate what users of the Irish health service expect from services and staff.
In addition a definition of person-centred co-ordinated care that is written not just for the experts, but for patients, people, families and carers
The goal is that the descriptors + definition of what good care and support that is centred around the needs and preferences of the service user/patient looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and act as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs.
There are three themes of descriptors:
‘Care for me’ focused on the direct relational experience with healthcare professionals.
‘Care I am confident in’ refers to the actual experience of care in terms of skills, quality, accountability and continuity of care.
‘Care in my journey through healthcare’ represents care that is holistic, accessible at a time needed and takes account of the world of the person and their carer beyond what was traditionally considered health care, but where health has an impact (e.g. education, working life)
The Clinical Strategy & Programmes Division of the HSE initiated the Patient Narrative Project to partner with users of healthcare services in the design and delivery of these services.
The Patient Narrative Project is a three phase project to progress to partnership working
IPPOSI, the Irish Platform for Patient Organisations, Science and Industry, led the first phase of the project. A UCD research team led by Dr Amanda Phelan carried out the research study which listened to the experiences of people who have had to use multiple health services over time or at one time and through the words of the service users and caregivers developed a set of statements that clearly articulate what users of the Irish health service expect from services and staff.
In addition a definition of person-centred co-ordinated care that is written not just for the experts, but for patients, people, families and carers
The goal is that the descriptors + definition of what good care and support that is centred around the needs and preferences of the service user/patient looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and act as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs.
There are three themes of descriptors:
‘My care experiences’ focused on the direct relational experience with healthcare professionals.
‘Care I am confident in’ refers to the actual experience of care in terms of skills, quality, accountability and continuity of care.
‘Care in my journey through healthcare’ represents care that is holistic, accessible at a time needed and takes account of the world of the person and their carer beyond what was traditionally considered health care, but where health has an impact (e.g. education, working life)
The experiences of patients, carers, and their organisations were translated into a definition of person-centred co-ordinated care that is written not just for the experts, but for patients, people, families and carers. 19
The goal is that the descriptors + definition of what good integrated care and support looks and feels like for people will be adopted nationally. They will be used to guide policy, strategy and design, and act as a guide to what teams at local levels should be aiming to achieve practically, in their efforts to integrate services around patient, family and carer needs.
‘Care for me’ ‘focused on the direct relational experience with healthcare professionals.
‘Care I can reply on’ ‘refers to the actual experience of care in terms of skills, quality, accountability and continuity of care.
‘Care in my journey through healthcare’ ‘represents care that is holistic, accessible at a time needed and takes account of the world of the person and their carer beyond what was traditionally considered health care, but where health has an impact (e.g. education, working life)
Phase 3: Framework to hear patient/service user experiences and use these to aid partnership driven local & national integrated care
My healthcare experiences: Direct relational experience with healthcare profs
Healthcare I am confident in: Actual experience of care in terms of skills, quality, accountability and continuity of care
My journey through healthcare: Three aspects: holistic care, coordination of care within and across services, and access to services when needed.
The statements and definition indicate that Irish health service users want to be empowered in a seamless journey through the health services, they want to take an active informed role in their care and to be treated as people not health conditions.
In addition they expect staff to live the values of the HSE; care, compassion, trust and learning within the workplace and their interactions
40 per county and 20 OP and 20 CC with the additional stories from the populations covered in Social Inclusion.
In addition to the collection of data the project will review the most effective and efficient means of stakeholder engagement in order that this can inform the project and business plan for longer term.
Patients are asked to identify acts of kindness and idea for improvement - There is a strong correlation between what people valued and what they would like to see more of. The human factors of communication, empathy, kindness rate highly in both.
How can this types of data collection, which gives us qualitative and quantitative data in real-time on an on-going basis, change the experiences of patients and service users?
Your Voice Matters provides evidence from the patient perspective that endorses the implementation of the HSE reform agenda and the key initiatives which stem from it. Fundamental to all initiatives are:
empowered patients / service users and their families;
a competent, well-informed, empathetic workforce;
communication and information systems and processes that support joined-up working
timely access to the right services
Interpretation of the data from the Your Voice Matters pilot by key stakeholders together identified three key areas for improvement that correlate with the principles of reform in the HSE:
clear communication and information
co-production between patients/service users and their families with staff working as partners in health and social care
improved access to services which are well co-ordinated.
Three key areas that if changed will make a difference to the experiences of patients and service users and there are a number of initiatives within the HSE that look to progress these areas in a long term and sustainable manner. It is important to be aware of and acknowledge these initiatives, their work and their long term goals
Actions from Your Voice Matters should build on the current initiatives within the HSE reform programme, quality improvement division and patient safety, and those which have recently been announced as a result of the National Patient Experience Survey – Acute Hospitals (2017). Such initiatives and programmes can act as conduits through which the improvements to services within the three key themes of ‘communication and information’, ‘patient and staff partnership’ and ‘service coordination and access’ can be pursued (see below figure 43). Such a co-ordinated and integrated approach to actions is important in order to achieve the common goal of improving the experiences and outcomes for everyone who uses health and social care services in a resource efficient and effective manner.
The experiences contributed to Your Voice Matters will be included in development of the national programme for ‘Enhancing communication skills with clinical staff’ (NPES). In addition the data is being used as a means of evaluation of ‘Values in Action’ as it is implemented across the HSE. Pilot data has been shared with the national lead group for this initiative.
Integration of work streams across the division boundaries at national level is supportive of integration at local levels.
In addition to the initiatives Your Voice Matters can influence in the ways above to bring the patient voice and experience to the table in co-design philosophy.
8.4. Evidence Base for Service User Representatives
Your Voice Matters data should be made accessible to patients / service users and their families when taking up representative positions on committees or forums such as the National Patient Forum and Patient Safety and Quality Committees within the Community Health Organisations and hospitals. This will strengthen their voice at the table in discussions and progress the implementation of co-design and co-production across health and social care services. Further discussion in relation to this is required with relevant staff in Quality Improvement and advocacy services (see figure 44)
8.5. Policy Development
Experiences from Your Voice Matters pilot national data that can bring the patient perspective to on-going initiatives or policy development should be identified and submitted to those service areas e.g., Mental Health services, Gynaecology. Communication pathways should be established to formalise this process (see figure 44)
8.6. Professional Training
Your Voice Matters data should be shared with the health staff professional groups and training programmes, particularly where behaviour change will have a positive impact on patient experience and where positive feedback should be shared. Some of the experiences that have been shared can be converted into case studies and training scenarios to develop professional insights and communication skills (see figure 44)
identification of enablers and challenges to successful implementation
Access to Information was primarily established to address the fragmentation that exists within the health systems in use in Ireland and to bring the silos of information together. It is also tasked with ensuring new systems and solutions being introduced will integrate with other systems and that no new silos of information are created. The function has an enterprise wide view of eHealth Solutions so information can flow easily through the system and can be reused and redirected where appropriate.
We haven’t figured out which IT system to use to make it easy to get the information we need and analyse the data, so we can present it back to our patients, and those who are commissioning the care from us. This is by no means an easy challenge to overcome.
I’ll let you into a secret – patients are not interested in treatments that don’t work.
Other stakeholders are interested in keeping the status quo – if they are not working, then you are simply wasting time…so concentrate on the things that do work.
A recent study estimated over 50 things which are on the NHS, which have been categorically shown not to work.
CIHR - Stephen Robbins
Greater focus on access & equity
Minimizing disruption to the patient
Negotiating goals
Is stratified medicine really targeting patients unmet needs?
Is the promise a fulfillable one?
If you happen to fit the bill (eligible for a trial), then great, but what about the others still in the dark?
Will PM affect the standard of care if its only for a small cohort?
If the trials are more efficient, we will know much quicker what the benefit will be..
Need confidence that the ‘off you go, flog it’
Regulators would prefer that biology follows the law, rather than the other way round…
From the patient view, I see the possibility of a life-changing intervention, being snatched away from me..
Ivacaftor is a clear black/white decision
For others, the benefits are less clear.
Its going to be incredibly difficult to organise development programmes to demonstrate the benefit and the value for money for making these available for routine prescription
When you are developing a trial, if you plan your trial based on my life, the things that really affect my life, then I am far more likely to be involved and support.
National Voices report that while NV can report with confidence on some key aspects of person-centred care, on others the data is severely inadequate or absolutely lacking.
NV conclusions about what should be measured are therefore at least as important as findings on what people experience.
When someone tells you that patients cannot understand or just do not want to know, just look at the data…..
Promote constructive dialogue towards solutions to improve healthcare
Does an informed patient have better health outcomes?
Does an activated patient have better health outcomes?
Does patient activation / empowerment reduce costs?