‘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
Why should I need eHealth? To overcome structures? IHE Integrated Tele- medicine Healthcare Enterprise Home healthcare Public health information eHealth Disease management Personal Services and tools for health independent living management Source: Niilo Saranummi, PICNIC Source of slide: Conference Athens 2006 5 Health Care Authorities Group
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 19 th Century, the role of Physician as the high priest of 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 of 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 other 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 …… 10
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 of 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) 12
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 optimal well-being. Person-centred care Patient Empowerment Health Literacy Support Active Respect Equip Involvement Partnership Community Self-management Shared treatment decision-making 13
Patient Empowerment interventions – Operational definition Empowerment intervention s 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 / 14
Conceptual framework MACRO level MESO level OUTCOMES MICRO level Patient Empowerment Strategies of PE aimed Strategies of PE aimed PROFESSIONALS EDUCATION towards PATIENTS towards Patient Satisfaction Professional Satisfaction SHARED DECISION- SELF-MANAGEMENT MAKING Quality of Life Clinical Outcomes Use of Health Services (Cost) 15
PROJECT PHASE Catalogues of Barriers and best practices of facilitators of PE PE (WP2) (WP1) Develop a ANALYSIS PHASE method to validate transferability of good practices on PE TRANSFERABILITY PHASE (WP3) Scenarios of possible EU collaboration on PE (WP4) 16
CATALOGUE ¡OF ¡BEST ¡PRACTICES– ¡ LITERATURE ¡ REVIEW, ¡DESCRIPTIVE ¡RESULTS(1118 ¡SR) ¡ ¡ Distribu?on ¡by ¡condi?on ¡ ¡ Distribu?on ¡by ¡dimension ¡ Mul9-‑ dimensional ¡ Shared ¡ 7 ¡ decision-‑ Mixed ¡ making ¡ chronic ¡ Educa9onal, ¡ 4 ¡ condi9ons, ¡ informa9on ¡ 16 ¡ provision ¡& ¡ Diabetes ¡ health ¡ type ¡1 ¡or ¡2, ¡ literacy ¡ Complex ¡ 28 ¡ 24 ¡ pa9ents); ¡2 ¡ Mental ¡ Self-‑ health ¡ management ¡ condi9ons ¡, ¡ Chronic ¡ 34 ¡ 6 ¡ cardiovascul ar ¡ Chronic ¡ condi9ons, ¡ respiratory ¡ 6 ¡ diseases ¡, ¡11 ¡ Selected ¡N= ¡69 ¡SR; ¡1728 ¡ar9cles ¡(SRs ¡filtered ¡using ¡AMSTAR ¡score ¡and ¡assessed ¡impact) ¡ ¡ 17
WP2 Methodology – Identification of barriers and facilitators 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 Prioritization – Survey 26 countries - 869 persons (+50% patients) Identification of 5 top clustered topics 18
Main ¡Barriers ¡and ¡Facilitators ¡(I) ¡ Clustered ¡topics ¡ Advantages ¡ Barriers ¡ Good ¡informa9on ¡about ¡your ¡own ¡ Pa9ents ¡access ¡non-‑reliable ¡ Pa?ent ¡educa?on ¡ disease ¡ informa9on ¡(Google, ¡wai9ng ¡room) ¡ Informa9on ¡on ¡prac9cal ¡support ¡ Reliable ¡informa?on ¡ Lack ¡of ¡informed ¡choices ¡ and ¡solu9ons ¡ Personalized ¡medica9on ¡history ¡(in ¡ Personalized ¡care ¡ Inappropriate ¡communica9on ¡ ¡ plain ¡language) ¡ Support ¡on ¡all ¡important ¡aspects ¡of ¡ Considera9on ¡of ¡the ¡pa9ent ¡as ¡a ¡ Holis?c ¡view ¡ life: ¡housing, ¡rela9onship, ¡ disease ¡or ¡treatment ¡instead ¡of ¡a ¡ employment, ¡etc. ¡ person ¡living ¡with ¡a ¡condi9on ¡ Contact ¡with ¡other ¡ Support ¡by ¡peers ¡ pa?ents ¡ More ¡powerful ¡pa9ents ¡unions/ Unclear ¡legisla9on, ¡lack ¡of ¡ Pa?ent ¡organiza?ons ¡ org. ¡ performance ¡measures ¡ Lack ¡of ¡general ¡environment ¡ involvement ¡(municipali9es, ¡ Social ¡support ¡ Rela9ves ¡give ¡support ¡ schools…) ¡ 19
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