eHealth and patient empowerment: making the marriage work Dr David - - PowerPoint PPT Presentation

‘eHealth and patient empowerment: making the marriage work’

Dr David Somekh European Health Futures Forum (EHFF)

We live in a digital age. We have all adopted smart phones so rapidly that we forget that most of us have only been carrying a small mobile computer in our purse or pocket for about 7 years or less…. But the partners in our proposed marriage have been around longer than that!

Telematics for health is a WHO composite term for both tele-medicine and tele- health, or any health-related activities carried out over distance by means of information communication technologies (adopted as a policy by the WHO Council in 1998) ¡ ¡ EHTEL (the European Health Telematics Association) was established in

• 1999. ¡

Notice that there is no suggestion of ‘empowerment’ here: ICT is being applied to healthcare to allow professionals and patients to overcome distance when it is a barrier to the conventional delivery of services

Health Care Authorities Group

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IHE Integrated Healthcare Enterprise eHealth Tele- medicine Home healthcare Disease management Personal health management Services and tools for independent living Public health information Source: Niilo Saranummi, PICNIC

Why should I need eHealth? To overcome structures?

Source of slide: Conference Athens 2006

Patient empowerment/ involvement/ engagement/ participation are all terms that refer to the one concept, that of the change from a passive dependent role to an active, participant role for the recipient of healthcare, in terms of their personal care, the monitoring and assessment of the outcome of services or in the planning and reorganisation of Service delivery. Its worth remembering that the exalted role of the medical profession is a nineteenth century creation. Although colleges of physicians and surgeons were founded in the sixteenth century in line with the craft guilds that had existed for several centuries before, the social status of doctors even in the early nineteenth century was of being respectable but middle- class, like merchants. They provided a service which was purchased and the customer had ultimate choice as to which opinion they accepted.

From the middle of the 19th Century, the role of Physician as the high priest

• f medical craft reached its peak, based on the mastery of traditional

knowledge – in particular the ability to recognise the diagnostic significance of complex combinations of signs and symptoms in common conditions now largely disappeared a hundred and fifty years later, such as syphilis, tuberculosis and rheumatic heart disease. In other words the killer diseases that flourished in the pre-antibiotic era. In the second half of the 20th Century, the Physician became the high priest

• f techno-savvy. Although pioneers such as Codman had advocated

measurement as a means of monitoring effectiveness as early as 1910, it was more than fifty years later that the era of ‘evidence-based medicine’ dawned (really not until 1990). However by then, diagnostic skills had increasingly become based on use of a barrage of clinical tests – medicine had become ‘scientised’.

As a reaction to the prevailing paternalism, as early as the beginning of the 1960s there were academic physicians such as Szasz et al that had challenged the prevailing social order, just as it was being challenged in

• ther spheres at that time. The key elements here were the principles of

choice over issues that affected one’s life, autonomy and pro-active

• involvement. By the 1970s there were signs of a move from a disease-

centred model of healthcare to a person-centred model, which almost by definition challenged the concept of the passive patient, although even today there is some disagreement over what ‘patient-centred’ means. Although since the 1990s the principle of patient involvement has been actively embraced as a policy, in practice it has proved hard to embed, due to the strength of existing attitudes, on both sides. Ironically it has been the rapid technical development of ICT that has provided the potential substrate for a significant acceleration in the process of transformational change.

Dr Google……

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However, to explore the cross-over between eHealth and patient empowerment more deeply, as a way of appreciating what the PALANTE project has achieved and what more may need to be done, let’s have a quick look at the outcomes of a recently published tender on self-management in chronic disease which was commissioned by DG-SANTE and carried out by a consortium led by FAD and EHFF: the EMPATHiE project

Empowering patients in the management

• f chronic diseases: objectives -

To help understand the concept of Patient Empowerment as a prerequisite to exercising patient rights. The specific objectives were: To identify best practices for patient empowerment To identify facilitators and barriers to empowering patients To develop a method to validate transferability of good practices To develop scenarios of EU future collaboration on this subject

Target groups Patients with chronic cardiovascular diseases (CVD or stroke) Patients with chronic respiratory diseases (COPD) Patients with chronic diabetes (type 1 and 2) Patients with mental health (schizophrenia or chronic depression) Complex patients (co-morbidity)

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Patient Empowerment – Operational definition

An empowered patient has control over the management of their conditions in daily life. They take action to improve the quality of their life and have the necessary knowledge, skills, attitudes and self-awareness to adjust their behaviour and to work in partnership with others where necessary, to achieve

• ptimal well-being.

Patient Empowerment Person-centred care

Self-management

Health Literacy Shared treatment decision-making Respect Involvement Equip Support

Community

Partnership Active 13

Patient Empowerment interventions – Operational definition

Empowerment interventions aim to equip patients (and their

informal caregivers whenever appropriate) with the capacity to participate in decisions related to their condition, to create awareness and develop competences of healthcare professionals and improve the preparedness of the healthcare system to tackle this paradigm.

Image credit: http://fmgators.ymcacassclay.org/2013/05/16/reminders-practice-island-park-summer/

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Patient Satisfaction Professional Satisfaction Quality of Life Clinical Outcomes Use of Health Services (Cost)

MACRO level MESO level MICRO level

OUTCOMES

SHARED DECISION- MAKING EDUCATION SELF-MANAGEMENT

Strategies of PE aimed towards PROFESSIONALS Strategies of PE aimed towards PATIENTS

Patient Empowerment

Conceptual framework

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Catalogues of best practices of PE (WP1) Scenarios of possible EU collaboration on PE (WP4) Barriers and facilitators of PE (WP2) Develop a method to validate transferability

• f good

practices on PE (WP3)

ANALYSIS PHASE TRANSFERABILITY PHASE

PROJECT PHASE

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CATALOGUE ¡OF ¡BEST ¡PRACTICES– ¡ LITERATURE ¡ REVIEW, ¡DESCRIPTIVE ¡RESULTS(1118 ¡SR) ¡ ¡

Diabetes ¡ type ¡1 ¡or ¡2, ¡ 28 ¡ Chronic ¡ cardiovascul ar ¡ condi9ons, ¡ 6 ¡ Chronic ¡ respiratory ¡ diseases ¡, ¡11 ¡ Mental ¡ health ¡ condi9ons ¡, ¡ 6 ¡ Complex ¡ pa9ents); ¡2 ¡ Mixed ¡ chronic ¡ condi9ons, ¡ 16 ¡ Educa9onal, ¡ informa9on ¡ provision ¡& ¡ health ¡ literacy ¡ 24 ¡ Self-­‑ management ¡ 34 ¡ Shared ¡ decision-­‑ making ¡ 4 ¡ Mul9-­‑ dimensional ¡ 7 ¡

Distribu?on ¡by ¡dimension ¡ Distribu?on ¡by ¡condi?on ¡ ¡

Selected ¡N= ¡69 ¡SR; ¡1728 ¡ar9cles ¡(SRs ¡filtered ¡using ¡AMSTAR ¡score ¡and ¡assessed ¡impact) ¡ ¡

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WP2 Methodology – Identification of barriers and

facilitators

Prioritization – Survey

26 countries - 869 persons (+50% patients) Identification of 5 top clustered topics

Exploration of topics - Focus groups

18 Countries - 170 persons (+50% patients) Identification 952 important facilitators and barriers (1/3 facilitators and 2/3 barriers) 19 clustered topics

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Main ¡Barriers ¡and ¡Facilitators ¡(I) ¡

Clustered ¡topics ¡ Advantages ¡ Barriers ¡ Pa?ent ¡educa?on ¡ Good ¡informa9on ¡about ¡your ¡own ¡ disease ¡ Pa9ents ¡access ¡non-­‑reliable ¡ informa9on ¡(Google, ¡wai9ng ¡room) ¡ Reliable ¡informa?on ¡ Informa9on ¡on ¡prac9cal ¡support ¡ and ¡solu9ons ¡ Lack ¡of ¡informed ¡choices ¡ Personalized ¡care ¡ Personalized ¡medica9on ¡history ¡(in ¡ plain ¡language) ¡ Inappropriate ¡communica9on ¡ ¡ Holis?c ¡view ¡ Support ¡on ¡all ¡important ¡aspects ¡of ¡ life: ¡housing, ¡rela9onship, ¡ employment, ¡etc. ¡ Considera9on ¡of ¡the ¡pa9ent ¡as ¡a ¡ disease ¡or ¡treatment ¡instead ¡of ¡a ¡ person ¡living ¡with ¡a ¡condi9on ¡ Contact ¡with ¡other ¡ pa?ents ¡ Support ¡by ¡peers ¡ Pa?ent ¡organiza?ons ¡ More ¡powerful ¡pa9ents ¡unions/

• rg. ¡

Unclear ¡legisla9on, ¡lack ¡of ¡ performance ¡measures ¡ Social ¡support ¡ Rela9ves ¡give ¡support ¡ Lack ¡of ¡general ¡environment ¡ involvement ¡(municipali9es, ¡ schools…) ¡

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Main ¡Barriers ¡and ¡Facilitators ¡(II) ¡

Clustered ¡topics ¡ Advantages ¡ Barriers ¡ Interac?on ¡between ¡pa?ent ¡ and ¡professional ¡ One ¡contact ¡person ¡assigned ¡and ¡ easily ¡reachable ¡ Lack ¡of ¡trust ¡ Health ¡care ¡professionals ¡-­‑ ¡ skills ¡ Coaching ¡skills ¡educa9on ¡(part ¡of ¡ professional ¡educa9on) ¡ Professionals ¡are ¡not ¡empathic ¡ enough ¡ Organiza?on ¡ A ¡single ¡shared ¡clinical ¡history ¡ Lack ¡of ¡9me ¡ Finance ¡ Availability ¡of ¡different ¡resources ¡for ¡ support ¡ Lack ¡of ¡financial ¡incen9ves ¡for ¡ Pa9ent ¡Empowerment ¡ Na?onal ¡programs ¡ Awareness ¡at ¡na9onal/European ¡ level ¡ Lack ¡of ¡ac9ve ¡promo9on ¡of ¡ healthy ¡lifestyles ¡ ¡ Inequity ¡ Higher ¡educated ¡pa9ents ¡can ¡ assume ¡a ¡more ¡ac9ve ¡role ¡ Added ¡difficulty ¡to ¡mo9vate ¡ and/or ¡educate ¡(low ¡socio-­‑ economic ¡status) ¡ ¡

Main ¡Barriers ¡and ¡Facilitators ¡(II) ¡

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Top 5 clustered aspects

Priority Topics important for patient empowerment

1

It helps that the healthcare professional has enough time to communicate with the patient

2

It helps that the healthcare professional has a holistic view of the patient

3

It helps that healthcare is well coordinated

4

It helps if the patient feels responsible for his/her own health

5

It helps that healthcare professionals work together

Slight differences in ranking when examined by respondent group or by Region 21

Method for transferability of good practices

Transferability model from one setting to another based on Pettigrew

“Practice content +Context + Implementation Process à à Outcome”

Findings of WP1 and WP2 linked to literature reviews concerning innovation, adoption and emergence of Good Practices in organizations; especially from social science and improvement science research.

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WP4 Methodology - Scenarios of possible EU collaboration

• n Patient Empowerment

Development and prioritization Exploration of possible scenarios

Inputs from WP3 Development of feasibility criteria Inputs from WP1 & 2 Development of initial scenarios

Explored in 2 workshops with relevant stakeholders

40 stakeholder interviews 104 respondents online survey

Selection and refinement of the 4 final scenarios 23

From the overall consultation process four final scenarios were developed with consideration of 1) the effort needed to start collaborating, 2) effectiveness in achieving patient empowerment, 3) perceived costs, 4) EU added value, 5) benefits and perceived risks and 6) barriers and success factors. The scenarios are:

• “The informed patient”
• “New professional skills, knowledge and attitudes”
• “Self-management supported by technology”
• “Transparent quality data for patient choice”

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25 Catalogue of good practices: interventions targeting patient empowerment tend to present positive results (when compared to conventional care). Further research is still needed to determine under which specific circumstances (contexts) different intervention types provide better results. There is an extensive number of systematic reviews of patient empowerment interventions targeting chronic patients and yet the literature related to complex patients and interventions specifically addressed at professionals is still substantially under-developed. Stronger evaluative work from meso and macro level initiatives is also needed.

Conclusions: 1

Conclusions: 2

26 The survey, though not based on random selection in each country, allowed identification of consistent stakeholder priorities and the future developments perceived as needed to strengthen patient empowerment. European collaboration could focus on developing the five prioritized key aspects that arise from the survey. There was no strong distinction between facilitators and barriers since almost every action was described in both senses. Suggested policy agenda areas at different levels include: focus on better education of patients and public, improved education

• f healthcare professionals in holistic thinking and communication,

specific restructuring of healthcare delivery and a central common electronic record accessible by patients as well as professionals.

Conclusion: 3

27 The method to validate transferability of good practices on PE should also be regarded as an improvement tool, directing attention to factors that may hinder the transferability of a promising Good Practice for Patient

• Empowerment. Especially, it directs attention to factors that are barriers but

are potentially changeable. A protocol is proposed for the further assessment/validation of transferability using Good practice examples derived from the WP1 catalogue, so that the method can be refined for more general use.

Conclusion: 4

28 Possible scenarios for EU collaboration. Patient empowerment is considered an important area by all stakeholders and all feel they have something to contribute. European collaboration on patient empowerment is seen in a positive light (73% would like to see an EU strategy and action plan). Other outcomes of collaboration highly rated were an improved evidence base, a common repository of best practices and tools, common indicators and comparable data.

Future actions of the EMPATHIE Network (1)

Platform of experts in self-care in minor conditions (PiSCE tender) Contribution to Chrodis JA as collaborating partner Continuing participation in Joint Action PASQ (FAD & EPF)

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Future actions of the EMPATHIE Network (2)

Supporting EPF campaign on Patient Empowerment 2015-2016 (see: http://www.eu-patient.eu/events/past-events-june-2015/ conference-on-patient-empowerment ) Contributing to European Innovation Partnership on Active and Healthy Aging: B3 Action area and Synergies group, A2 Action area etc.

What implications does this and similar work have for the results of the PALANTE project?

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The paternalism test (co-production?)

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The communication test (a):

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The communication test (b):

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The innovation test:

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In this simplistic form, there is the basis for rating achievements in projects which aim to facilitate usage of eHealth tools and improve health literacy.

It is possible to frame the criteria against the definition of patient empowerment:

• How is improvement in health literacy assessed?
• How is evidence of an increased level of shared-decision making assessed?
• Are patients asked about their experience of using the tools, as well as their

expectations or concerns about them?

• If constructive suggestions arise from focus group type exercises, is

subsequent implementation of these suggestions assessed?

• What evidence is there that greater use of eHealth tools leads to changes in

the structure and delivery of services (innovation)

37 The challenge then, is to demonstrate that greater access to eHealth tools and data really does lead to a measureable improvement along the lines that the project clearly aspires to. ‘Patient satisfaction’ with access is obviously not enough. Can we demonstrate changes in behaviour, both of the patients now able to access their healthcare data but also resultant changes in the behaviour of HCPs (i.e. redesign of services?) Accepted, these are tough criteria, but unless they are met, the investment will lead to only marginal improvements and essentially sustains the traditional system – just a more shiny version of the old one.

A parting challenge : the ePatient

38 An e-patient is a health consumer who participates fully in his/her medical care. Sometimes referred to as an "internet patient," e-patients see themselves as equal partners with their doctors in the healthcare

• process. ¡

Based on the current state of knowledge on the impact of e-patients on the healthcare system and the quality of care received: ¡

• A growing number of people say the internet has played a crucial
• r important role as they helped another person cope with a

major illness. ¡

• Since the advent of the Internet, many clinicians have

underestimated the benefits and overestimated the risks of

• nline health resources for patients.
• Medical online support groups have become an important

healthcare resource. A new phenomenon is the use of social media as an alternative, something difficult to monitor by health

• providers. ¡

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• “…the net friendliness of clinicians and provider organizations—as

rated by the e-patients they serve—is becoming an important new aspect

• f healthcare quality.”
• In order to understand the impact of the e-patient, clinicians will likely

need to move beyond “pre-internet medical constructs.” Research must combine expertise from disciplines that are not used to working together.

• It is crucial for medical education to take the e-patient into account, and

to prepare students for medical practice that includes the e-patient.

As our historical review at the start of this presentation makes clear, it’s a long and winding road that leads to reaping the full potential benefits of the marriage between eHealth and patient empowerment

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