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Bringing the patient experience to life
An Introduction to Customer Faithful:
  Our Work in Healthcare



Our work is about uncovering and interpreting the
experiences and needs of patients and those around them.
Our guiding principle is to frame healthcare needs in the
context of how they are perceived by individuals, rather
than those delivering healthcare services.
It casts the patient in the role of ‘expert’, and seeks to learn
directly from their views, stories and experiences, not just
their symptoms.
By bringing the ‘lived experience’ of patients alongside
more traditional healthcare information, our work can
enable a far richer understanding of patients’ quality of life,
as well as where and how it may be enhanced.




                                                                   © 2013
How Does Our Work Benefit Healthcare Organisations?


Our insight work is truly patient-centred, placing as much meaning in
things they feel are important in their lives as those defined by
professionals involved in their healthcare.
This makes the approach ideally suited for enabling healthcare
organisations to gain a more balanced and inclusive perspective of
living with health conditions.
We can support healthcare organisations in many ways, including:
     •  enabling organisations to identify the needs of patients at given
        stages of therapy, and the role and impact it plays in their lives
     •  pinpointing where patients / families seek support when ‘living’
        with a condition, and how new/existing services could provide
        help
     •  demonstrating a patient-centred view of health to HCPs, patient
        advocacy groups, KOLs and beyond
     •  contributing thought-leadership and insight into wider
        stakeholder debate, such as policy development or public
        awareness



                                                                             © 2013
How Does Our Work Benefit Healthcare Organisations?


Examples of how patients and healthcare professionals (HCPs) can
apply Lifelines insights include:
• Identifying needs that can be met by developing integrated or multi-
disciplinary care plans, incorporating health, social and preventative
care. In addition to defining needs, Lifelines can also highlight to HCPs
how patients understand existing service provision, and the degree of
confidence they have in them.
• Pinpointing areas and issues where patients are seeking to manage
their own care, including the information they need to do this
• Descriptions of ‘what good looks like” – patient-defined examples of
how and when specific environments, services and support tools can
support individuals across the patient pathway
• Detailing clues that enable (or prevent) early diagnosis to take place
• Building a catalogue of rehabilitation tricks, traps and tips that patients
develop, as they come to terms with their condition
• Outlining life events that can signal a need for emotional,
psychological or practical support, impacting a patient’s ability to cope
with their health condition

                                                                                © 2013
Our Insight is built in four stages

             Literature Review
             •  Assemble and organise core knowledge from existing insight
                both within an organisation and beyond


             Life Stories
             •  Enhance depth of insight, through rich and detailed accounts
                from patients and those around them


             Analysis
             •  Integrate information, combining literature-review data with
                patients’ feelings and perceptions


             Insight
             •  Interpret findings into clear recommendations which are solidly
                evidenced, and compelling to read




                                                                                  © 2013
Our Lifelines™ Methodology


Our core method is qualitative, semi-structured interviews, with each in-depth
discussion audio-recorded and analysed for high level themes /lower level evidence


•  Our technique develops insight from life 'episodes'
   rather than responding to predetermined topics
•  We try to define what’s valued as important, vs.
   how well it’s delivered
•  We use interpretative phenomenological analysis
   (IPA) – a detailed study of transcript data
•  We display our insight as a journey, defined by
   patient language, not clinicians
•  It is visual, illustrative – an aid to understanding
   rather than a quantitative assessment - there are
   no numbers on these graphics, but there are clues
   to the experience of how people manage living with
   a condition.

 Lifelines™ is a registered trademark of Customer Faithful ®2013   © 2013
A closer look at Lifelines™




                                                                                                              4




                        1




                                  2



                                                               3


     The shape and definition of a Lifelines chart provides an ‘at-a-glance’ overview of patient experience

 1   Lifelines journey steps are defined by patients in their own language

 2   Lifeline data points detail the issues that matter to patients (captured from a range of sources)

 3   The graph charts two ‘life lines’ – the importance of issues to patients vs. existing delivery success

 4   Lifelines highlights areas of convergence and divergence, using ‘traffic-light’ coding and commentary
                                                                                                                  © 2013
What Makes Lifelines So Special?

                                                                            ‘Bring To Life’ Features

                                                                            1.    Life stories allow richer and more
                                                                                  detailed insight into Lifelines
                                                                                  graphics
                                                                            2.    Source data integration enables
                                                                                  other study materials to be
                                                                                  combined for wider validation
                                                                            3.    Drill-Down referencing, provides
                                                                                  identification of source data, point-
                                                                                  by-point
                                                                            4.    ‘Zoom-in filters’ can highlight
                                                                                   individual patient profiles or specific
 Our Lifelines patient insight programmes have been used across a                  life-episodes
 wide range of health conditions, from Rheumatoid Arthritis and             5.    Auditable data supporting peer
 Alzheimer’s Disease, to less common conditions such as                           review for academic publication
 Haemophilia and Pulmonary Arterial Hypertension.
                                                                            6.    Dual-format presentation via
 Lifelines offers easy-to-read visual illustration, robust analysis and a
 range of design attributes we call ‘Bring To Life’ features.
                                                                                  PowerPoint slides or hard-bound
                                                                                  display books for use with
                                                                                  customers and wider stakeholders



                                                                                               © 2013
Our Credentials – A Quality Commitment


        Customer Faithful is led by Rick Harris, who has over 20+ years of research
        experience across a range of industry sectors.
        Under his direction, the Lifelines research process has been developed and
        continually evolved during its use in healthcare and other industries. In addition
        to his own skills, Customer Faithful brings together a highly experienced team
        with wide commercial as well as research experience.
        Lifelines is underpinned by a range of quality assurances:
                •  all project teams are custom-built and overseen by Rick Harris,
                   ensuring a consistent approach and expert guidance                                              Rick Harris

                •  Lifelines incorporates some of the latest thinking and techniques in                        Managing Director,
                                                                                                               Customer Faithful
                   healthcare qualitative research, including IPA study1
                •  Lifelines has been designed for peer-review, and so offers a
                   transparent audit trail, suitable for support of publication of findings
                        o  its consistent format makes quality review easy-to-manage and
                           distinctive when sharing with wider stakeholders




1   IPA - Interpretative Phenomenological Analysis (IPA) – developed at Birkbeck University of London, 1996   © 2013
Supporting Thought Leadership


In recent years, there has been a growing acknowledgement in the UK -
                                                                                                                                   “Research from the Picker Institute,
across the healthcare community - of the value of patient insight, and a                                                            The Health Foundation and others
commitment to seek ways to access it.                                                                                                 shows how far away we are from
                                                                                                                                        healthcare that really meets the
However, despite the widespread use of national surveys and complaints                                                           priorities and preferences of patients.
data, an investment in ‘smaller-scale, greater-depth’ qualititative research                                                   Patients and their families and friends,
has been largely missed.                                                                                                       both individually and collectively, know
                                                                                                                                   a great deal about health services
                                                                                                                               from the most important end – service
We firmly believe that our work is making a significant contribution in                                                                delivery. We need to utilise this
improving how to engage with and listen to patients, so that healthcare                                                            intelligence, these experiences, to
design is centred on the needs of those using them, rather than those                                                            guide and inform and make it part of
                                                                                                                                                 the power of change.”
delivering them.
                                                                                                                                                           Harry Cayton, 2006

Overall, our approach is innovative and focused on a quality of insight                                                           Council for Healthcare Regulatory Excellence

which seeks to break new ground in improving the lives of patients.
In so doing, we feel that such insight programmes are an ideal fit with the
wider ambitions and values of the healthcare industry.

      “…The Outcomes Framework is only one part of our journey. If we want the NHS not to treat patients as though they are parts on a
    conveyor belt, we need to go further. We need to empower patients, their doctors and nurses to work together to get the best possible
                              care. We need patients to be fully engaged in the decision making process. Having a voice, loud and clear.
  We are inviting people to use their creativity and ingenuity, and to surprise us with what they come up with…..allowing data to be used in
                                                                              this way will help improve the health and experience of patients”
                                                                                                   Andrew Lansley, 2011 - Secretary of State for Health


                                                                                                                                 © 2013
For further information about Customer Faithful, contact…….




Rick Harris, Managing Director
Customer Faithful
rick@customerfaithful.com
www.customerfaithful.com




                                                          © 2013

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Introducing Lifelines - a methodology for patient-centricity

  • 1. Bringing the patient experience to life
  • 2. An Introduction to Customer Faithful: Our Work in Healthcare Our work is about uncovering and interpreting the experiences and needs of patients and those around them. Our guiding principle is to frame healthcare needs in the context of how they are perceived by individuals, rather than those delivering healthcare services. It casts the patient in the role of ‘expert’, and seeks to learn directly from their views, stories and experiences, not just their symptoms. By bringing the ‘lived experience’ of patients alongside more traditional healthcare information, our work can enable a far richer understanding of patients’ quality of life, as well as where and how it may be enhanced. © 2013
  • 3. How Does Our Work Benefit Healthcare Organisations? Our insight work is truly patient-centred, placing as much meaning in things they feel are important in their lives as those defined by professionals involved in their healthcare. This makes the approach ideally suited for enabling healthcare organisations to gain a more balanced and inclusive perspective of living with health conditions. We can support healthcare organisations in many ways, including: •  enabling organisations to identify the needs of patients at given stages of therapy, and the role and impact it plays in their lives •  pinpointing where patients / families seek support when ‘living’ with a condition, and how new/existing services could provide help •  demonstrating a patient-centred view of health to HCPs, patient advocacy groups, KOLs and beyond •  contributing thought-leadership and insight into wider stakeholder debate, such as policy development or public awareness © 2013
  • 4. How Does Our Work Benefit Healthcare Organisations? Examples of how patients and healthcare professionals (HCPs) can apply Lifelines insights include: • Identifying needs that can be met by developing integrated or multi- disciplinary care plans, incorporating health, social and preventative care. In addition to defining needs, Lifelines can also highlight to HCPs how patients understand existing service provision, and the degree of confidence they have in them. • Pinpointing areas and issues where patients are seeking to manage their own care, including the information they need to do this • Descriptions of ‘what good looks like” – patient-defined examples of how and when specific environments, services and support tools can support individuals across the patient pathway • Detailing clues that enable (or prevent) early diagnosis to take place • Building a catalogue of rehabilitation tricks, traps and tips that patients develop, as they come to terms with their condition • Outlining life events that can signal a need for emotional, psychological or practical support, impacting a patient’s ability to cope with their health condition © 2013
  • 5. Our Insight is built in four stages Literature Review •  Assemble and organise core knowledge from existing insight both within an organisation and beyond Life Stories •  Enhance depth of insight, through rich and detailed accounts from patients and those around them Analysis •  Integrate information, combining literature-review data with patients’ feelings and perceptions Insight •  Interpret findings into clear recommendations which are solidly evidenced, and compelling to read © 2013
  • 6. Our Lifelines™ Methodology Our core method is qualitative, semi-structured interviews, with each in-depth discussion audio-recorded and analysed for high level themes /lower level evidence •  Our technique develops insight from life 'episodes' rather than responding to predetermined topics •  We try to define what’s valued as important, vs. how well it’s delivered •  We use interpretative phenomenological analysis (IPA) – a detailed study of transcript data •  We display our insight as a journey, defined by patient language, not clinicians •  It is visual, illustrative – an aid to understanding rather than a quantitative assessment - there are no numbers on these graphics, but there are clues to the experience of how people manage living with a condition. Lifelines™ is a registered trademark of Customer Faithful ®2013 © 2013
  • 7. A closer look at Lifelines™ 4 1 2 3 The shape and definition of a Lifelines chart provides an ‘at-a-glance’ overview of patient experience 1 Lifelines journey steps are defined by patients in their own language 2 Lifeline data points detail the issues that matter to patients (captured from a range of sources) 3 The graph charts two ‘life lines’ – the importance of issues to patients vs. existing delivery success 4 Lifelines highlights areas of convergence and divergence, using ‘traffic-light’ coding and commentary © 2013
  • 8. What Makes Lifelines So Special? ‘Bring To Life’ Features 1.  Life stories allow richer and more detailed insight into Lifelines graphics 2.  Source data integration enables other study materials to be combined for wider validation 3.  Drill-Down referencing, provides identification of source data, point- by-point 4.  ‘Zoom-in filters’ can highlight individual patient profiles or specific Our Lifelines patient insight programmes have been used across a life-episodes wide range of health conditions, from Rheumatoid Arthritis and 5.  Auditable data supporting peer Alzheimer’s Disease, to less common conditions such as review for academic publication Haemophilia and Pulmonary Arterial Hypertension. 6.  Dual-format presentation via Lifelines offers easy-to-read visual illustration, robust analysis and a range of design attributes we call ‘Bring To Life’ features. PowerPoint slides or hard-bound display books for use with customers and wider stakeholders © 2013
  • 9. Our Credentials – A Quality Commitment Customer Faithful is led by Rick Harris, who has over 20+ years of research experience across a range of industry sectors. Under his direction, the Lifelines research process has been developed and continually evolved during its use in healthcare and other industries. In addition to his own skills, Customer Faithful brings together a highly experienced team with wide commercial as well as research experience. Lifelines is underpinned by a range of quality assurances: •  all project teams are custom-built and overseen by Rick Harris, ensuring a consistent approach and expert guidance Rick Harris •  Lifelines incorporates some of the latest thinking and techniques in Managing Director, Customer Faithful healthcare qualitative research, including IPA study1 •  Lifelines has been designed for peer-review, and so offers a transparent audit trail, suitable for support of publication of findings o  its consistent format makes quality review easy-to-manage and distinctive when sharing with wider stakeholders 1 IPA - Interpretative Phenomenological Analysis (IPA) – developed at Birkbeck University of London, 1996 © 2013
  • 10. Supporting Thought Leadership In recent years, there has been a growing acknowledgement in the UK - “Research from the Picker Institute, across the healthcare community - of the value of patient insight, and a The Health Foundation and others commitment to seek ways to access it. shows how far away we are from healthcare that really meets the However, despite the widespread use of national surveys and complaints priorities and preferences of patients. data, an investment in ‘smaller-scale, greater-depth’ qualititative research Patients and their families and friends, has been largely missed. both individually and collectively, know a great deal about health services from the most important end – service We firmly believe that our work is making a significant contribution in delivery. We need to utilise this improving how to engage with and listen to patients, so that healthcare intelligence, these experiences, to design is centred on the needs of those using them, rather than those guide and inform and make it part of the power of change.” delivering them. Harry Cayton, 2006 Overall, our approach is innovative and focused on a quality of insight Council for Healthcare Regulatory Excellence which seeks to break new ground in improving the lives of patients. In so doing, we feel that such insight programmes are an ideal fit with the wider ambitions and values of the healthcare industry. “…The Outcomes Framework is only one part of our journey. If we want the NHS not to treat patients as though they are parts on a conveyor belt, we need to go further. We need to empower patients, their doctors and nurses to work together to get the best possible care. We need patients to be fully engaged in the decision making process. Having a voice, loud and clear. We are inviting people to use their creativity and ingenuity, and to surprise us with what they come up with…..allowing data to be used in this way will help improve the health and experience of patients” Andrew Lansley, 2011 - Secretary of State for Health © 2013
  • 11. For further information about Customer Faithful, contact……. Rick Harris, Managing Director Customer Faithful rick@customerfaithful.com www.customerfaithful.com © 2013