Visiting Researcher Fondation BROCHER

WHO, April 15th 2015

Sabine E. Wildevuur Head Creative Care Lab Waag Society

Researcher, VU University A’dam

Towards ‘smart’ health care: Using e-health to manage

chronic diseases in a person-centred approach of care

I.  BACKGROUND

II.  TRENDS IN E-HEALTH

III.  E-HEALTH & PERSON-CENTERED CARE

IV.  ICT-ENABLED PCC

V.  QUESTIONS & DISCUSSION

I BACKGROUND

• Waag Society •  VU University Amsterdam (NL) •  ‘Connect: Design for an Empathic Society’ (2013) • UNEP, Nairobi (Kenia) • Medic Info (NL) •  Like Wildfire, Science & New Media •  Planet Medica, Brussels (BE) •  ‘Invisible Vision: Could Science learn from the Arts?’ (2009) • Green College, Oxford (UK) • Royal Dutch Medical Association • Medicine and Communication Science, University of

Amsterdam (NL)

BACKGROUND

Creative Care Lab Waag Society, A’dam (NL)

4 HEALTHCARE PROFESSIONALS & PATIENTS # HealthPatch by Vital Connect

Chronic non-communicable diseases are the leading cause of illness, disability and mortality in the world (WHO 2014).

HEALTH POLICIES

EXAMPLE DIABETES TYPE 1

Re-thinking Diabetes 1 care related devices in a user-centered way © MICKAEL BOULAY

# MEASURING LESS TO FEEL MORE

47 years old Married, two children

Profession: Mechanical engineer & entrepreneur

Diabetic type 1 for 19 years

ROBIN

Painful finger pricks Monitoring blood glucose levels Calculating right amount of insulin Multiple daily injections Coordination daily activities & Hypo’s and Hypers…

DAILY LIFE MADE OF

HE IS NOT THE ONLY ONE…

347 million people worldwide have diabetes (WHO).

Diabetes 1 is NOT preventable.

A closed loop system which:

1 sense the blood sugar level

2 algorythm process

3 react by using one of the 2 hormons (- via insulin or + via glucagon)

= blood sugar level is continuously in the safe zone.

ONE IDEA

PROOF OF CONCEPT 2004

© MICKAEL BOULAY

THE ARTIFICIAL PANCREAS concept to product

2 sensors

Insulin Glucagon

Self learning algorythm

AP current size Iphone 5 AP estimated future size

Interface supports the user in trusting the system

USABILITY

USABILITY

Evaluation of protoypes with diabetic users from the Dutch Diabetes Association

A better management of blood sugar level means:

-  Short term: Increasing the quality of life of persons with diabetics

- Long term: Decreasing chances of complications = better ageing

IMPACT

II TRENDS

ELECTRO CARDIO GRAM (1911)

# STAR TRACK ‘TRICORDER’ (1966)

# KICKSTARTER SCANADU SCOUT (US)

“EMPOWER” PATIENT # WITHINGS (FR)

www.psfk.com/future-of-wearable-tech

# MIMO BABY MONITORING/© INTEL

III E-HEALTH & PERSON-CENTERED CARE

“The health and the life of my patients will be my first consideration.”

Oath of Hippocrates(460–370 BC)

4 HEALTHCARE PROFESSIONALS & PATIENTS # HealthPatch by Vital Connect

E-health = ICT applied in the field of health care

How can information and communication technology (e-health) afford chronic disease management in a person centered approach of care?

E-HEALTH BECOMES CATCH ALL

WHO-PCC

“…putting people at the centre of health care, harmonizing mind and body, people and systems.” (WHO, 2007)

Person-centered care is a term used for healthcare and social services which reflect the individual’s unique preferences, values and needs, identified and agreed upon in partnership with the physician.

Ekman I, Swedberg K, Taft C, et al Person-Centred Care – Ready for Prime Time. Eur J Cardiovasc Nurs. 2011 10:248-51.

PERSON-CENTERED CARE - PARTNERSHIP

1.  Uncertainty in illness reduced

2.  Improved pain relief

3.  Shorter hospital stay (30 – 50 %)

4.  40% cost reduction Olsson L-E et al: Journal of Orthopaedic Surgery and Research, 2006, 1:3. Ekman I, et al: European Heart Journal, 2011, 32:2395–2404. Olsson LE et aI: Journal of Advanced Nursing, 2007, 58(2):116-25. Olsson LE, et al: Journal of Advanced Nursing, 2009, 65(8):1626-1635. Dudas K, et al Eur J Cardiovasc Nurs. Eur J Cardiovasc Nurs. 2012; 12(6) 521–528

RESULTS

Personalized medicine

•  Adaptation of diagnostics and therapies to imaging, biomarkers and genes.

•  Adaptation to unique genotypes.

• New screening tools, therapies.

•  Placing the person at the centre of care.

•  Partnership building on the person’s capacities and own will.

• New care models, organization; incentives, reimbursement system etc

Person-Centred Care

Ekman I, Swedberg K, Taft C, et al Person-Centred Care – Ready for Prime Time. Eur J Cardiovasc Nurs. 2011 10:248-51.

IV ICT-ENABLED PERSON-CENTRED CARE

QUANTITATIVE OR QUALITATIVE?

“Not everything that can be counted counts. Not everything that counts can be counted.”

© Albert Einstein? William Bruce Cameron?

SCOPING REVIEW

1)  Identify the research question 2)  Identify relevant studies 3)  Select studies 4)  Chart the data 5)  Collate, summarize and report the results.

Arksey, O’Malley (2005). Scoping studies: towards a methodological framework. International journal of social research methodology

Review

Information and Communication Technology–EnabledPerson-Centered Care for the “Big Five” Chronic Conditions:Scoping Review

Sabine E Wildevuur1,2, MSc; Lianne WL Simonse3, PhD,MSc1Talma Institute, Social Sciences, VU University Amsterdam, Amsterdam, Netherlands2Institute for Art, Science and Technology, Creative Care Lab, Waag Society, Amsterdam, Netherlands3Faculty of Industrial Design Engineering, Product Innovation Management Department, Delft University of Technology, Delft, Netherlands

Corresponding Author:Sabine E Wildevuur, MScTalma InstituteSocial SciencesVU University AmsterdamVU Amsterdam/FSW/SOCDe Boelelaan 1081Amsterdam, 1081 HVNetherlandsPhone: 31 205986888Fax: 31 0205986800Email: s.wildevuur@vu.nl

AbstractBackground: Person-centered information and communication technology (ICT) could encourage patients to take an activepart in their health care and decision-making process, and make it possible for patients to interact directly with health care providersand services about their personal health concerns. Yet, little is known about which ICT interventions dedicated to person-centeredcare (PCC) and connected-care interactions have been studied, especially for shared care management of chronic diseases. Theaim of this research is to investigate the extent, range, and nature of these research activities and identify research gaps in theevidence base of health studies regarding the “big 5” chronic diseases: diabetes mellitus, cardiovascular disease, chronic respiratorydisease, cancer, and stroke.Objective: The objective of this paper was to review the literature and to scope the field with respect to 2 questions: (1) whichICT interventions have been used to support patients and health care professionals in PCC management of the big 5 chronicdiseases? and (2) what is the impact of these interventions, such as on health-related quality of life and cost efficiency?Methods: This research adopted a scoping review method. Three electronic medical databases were accessed: PubMed, EMBASE,and Cochrane Library. The research reviewed studies published between January 1989 and December 2013. In 5 phases ofsystematic scanning and reviewing, relevant studies were identified, selected, and charted then we collated, summarized, andreported the results.Results: From the initial 9380 search results, we identified 350 studies that qualified for inclusion: diabetes mellitus (n=103),cardiovascular disease (n=89), chronic respiratory disease (n=73), cancer (n=67), and stroke (n=18). Persons with one of thesechronic conditions used ICT primarily for self-measurement of the body when interacting with health care providers with thehighest rates of use seen in chronic respiratory (63%, 46/73) and cardiovascular (53%, 47/89) diseases. We found 60 relevantstudies (17.1%, 60/350) on person-centered shared management ICT, primarily using telemedicine systems as personalized ICTinterventions. The highest impact measured related to the increase in empowerment (15.4%, 54/350). Health-related quality oflife accounted for 8%. The highest impact connected to health professionals was an increase in clinical outcome (11.7%, 41/350).The impacts on organization outcomes were decrease in hospitalization (12.3%, 43/350) and cost efficiency (10.9%, 38/350).Conclusions: This scoping review outlined ICT-enabled PCC in chronic disease management. Persons with a chronic diseasecould benefit from an ICT-enabled PCC approach, but ICT-PCC also yields organizational paybacks. It could lead to an increasein health care usage, as reported in some studies. Few interventions could be regarded as “fully” addressing PCC. This review

J Med Internet Res 2015 | vol. 17 | iss. 3 | e77 | p.1http://www.jmir.org/2015/3/e77/(page number not for citation purposes)

Wildevuur & SimonseJOURNAL OF MEDICAL INTERNET RESEARCH

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SEARCH RESULTS SCOPING STUDY

Wildevuur SE, Simonse LWL Information and Communication Technology–Enabled Person-Centered Care for the “Big Five” Chronic Conditions: Scoping Review J Med Internet Res 2015;17(3):e77

Increase of studies 1989-2013

Table 8. Outcomes of the information and communication technology interventions for person-centered care and connected-care management.

Stroken=18

Cancern=67

Respiratoryn=73

Cardiovascularn=89

Diabetesn=103

OverallN=350

Outcomes

NegPosNegPosNegPosNegPosNegPosNegPos

n (%)n (%)n (%)n (%)n (%)n (%)n (%)n (%)n (%)n (%)n (%)n (%)

5 (1)3 (1)6 (2)11 (3)25 (7)No outcomes

1 (0)13 (4)4 (1)42 (12)19 (5)45(13)

12 (3)45(13)

9 (3)79(23)

45(13)

224 (64)Person outcomes

2 (1)2 (1)8 (2)3 (1)8 (2)1 (0)28 (8)6 (2)46 (13)Quality of life

1 (0)3 (1)12 (3)14 (4)3 (1)5 (1)8 (2)18 (5)28 (8)Health-related quality of life

1 (0)1 (0)Mental health–related qualityof life

11 (3)1 (0)11 (3)1 (0)Mortality (less)

2 (1)1 (0)3 (1)2 (1)1 (0)5 (1)1 (0)8 (2)4 (1)19 (5)Self-efficacy

3 (1)11 (3)2 (1)11 (3)7 (2)22 (6)2 (1)54 (15)Empowerment (self-care)

4 (1)5 (1)10 (3)30 (9)49 (14)Physical condition

1 (0)9 (3)1 (0)9 (3)Metabolic control

1 (0)1 (0)Pain reduction

1 (0)1 (0)1 (0)3 (1)Behavior change

2 (1)11 (3)2 (1)2 (1)13 (4)Mental health condition

1 (0)1 (0)Loneliness

1 (0)9 (3)0 (0)6 (2)7 (2)23 (7)1 (0)32 (9)3 (1)11 (3)12 (3)81 (23)Connected to health profession-al outcomes

4 (1)5 (1)3 (1)12 (3)Medication adherence

1 (0)3 (1)4 (1)8 (2)Treatment adherence

1 (0)7 (2)1 (0)4 (1)11 (3)17 (5)3 (1)5 (1)8 (2)41 (12)Clinical outcomes

3 (1)1 (0)4 (1)Effectives of intervention

1 (0)2 (1)1 (0)1 (0)5 (1)Documentation quality

2 (1)2 (1)2 (1)3 (1)9 (3)Communication quality

1 (0)2 (1)3 (1)6 (2)Health knowledge

0 (0)6 (2)3 (1)11 (3)19 (5)12 (3)31 (9)26 (7)6 (2)18 (5)59(17)

73 (21)Organization outcomes (caremodel)

7 (2)4 (1)7 (2)1 (0)15 (4)1 (0)9 (3)6 (2)38 (11)Cost efficiency

1 (0)1 (0)4 (1)5 (1)11 (3)(Time) efficiency

1 (0)1 (0)2 (1)1 (0)1 (0)4 (1)Quality effectiveness

1 (0)1 (0)Productivity

2 (1)13 (4)4 (1)26 (7)2 (1)2 (1)43(12)

6 (2)Less hospitalization

1 (0)1 (0)Reduced comanagement

2 (1)1 (0)2 (1)2 (1)3 (1)2 (1)6 (2)6 (2)Implementation enablers /barriers (including ethical)

1 (0)2 (1)1 (0)3 (1)1 (0)Improve office visits / replaceface-to-face consult

3 (1)2 (1)5 (1)Improve access difficulties

0 (0)5 (1)1 (0)23 (7)1 (0)22 (6)0 (0)22 (6)0 (0)19 (5)2 (1)91 (26)Technical outcomes

3 (1)10 (3)9 (3)6 (2)7 (2)35 (10)Feasibility

6 (2)4 (1)6 (2)5 (1)21 (6)Usability

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Wildevuur & SimonseJOURNAL OF MEDICAL INTERNET RESEARCH

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PERSON OUTCOMES

Wildevuur SE, Simonse LWL. Information and Communication Technology–Enabled Person-Centered Care for the “Big Five” Chronic Conditions: Scoping Review J Med Internet Res 2015;17(3):e77

Table 8. Outcomes of the information and communication technology interventions for person-centered care and connected-care management.

Stroken=18

Cancern=67

Respiratoryn=73

Cardiovascularn=89

Diabetesn=103

OverallN=350

Outcomes

NegPosNegPosNegPosNegPosNegPosNegPos

n (%)n (%)n (%)n (%)n (%)n (%)n (%)n (%)n (%)n (%)n (%)n (%)

5 (1)3 (1)6 (2)11 (3)25 (7)No outcomes

1 (0)13 (4)4 (1)42 (12)19 (5)45(13)

12 (3)45(13)

9 (3)79(23)

45(13)

224 (64)Person outcomes

2 (1)2 (1)8 (2)3 (1)8 (2)1 (0)28 (8)6 (2)46 (13)Quality of life

1 (0)3 (1)12 (3)14 (4)3 (1)5 (1)8 (2)18 (5)28 (8)Health-related quality of life

1 (0)1 (0)Mental health–related qualityof life

11 (3)1 (0)11 (3)1 (0)Mortality (less)

2 (1)1 (0)3 (1)2 (1)1 (0)5 (1)1 (0)8 (2)4 (1)19 (5)Self-efficacy

3 (1)11 (3)2 (1)11 (3)7 (2)22 (6)2 (1)54 (15)Empowerment (self-care)

4 (1)5 (1)10 (3)30 (9)49 (14)Physical condition

1 (0)9 (3)1 (0)9 (3)Metabolic control

1 (0)1 (0)Pain reduction

1 (0)1 (0)1 (0)3 (1)Behavior change

2 (1)11 (3)2 (1)2 (1)13 (4)Mental health condition

1 (0)1 (0)Loneliness

1 (0)9 (3)0 (0)6 (2)7 (2)23 (7)1 (0)32 (9)3 (1)11 (3)12 (3)81 (23)Connected to health profession-al outcomes

4 (1)5 (1)3 (1)12 (3)Medication adherence

1 (0)3 (1)4 (1)8 (2)Treatment adherence

1 (0)7 (2)1 (0)4 (1)11 (3)17 (5)3 (1)5 (1)8 (2)41 (12)Clinical outcomes

3 (1)1 (0)4 (1)Effectives of intervention

1 (0)2 (1)1 (0)1 (0)5 (1)Documentation quality

2 (1)2 (1)2 (1)3 (1)9 (3)Communication quality

1 (0)2 (1)3 (1)6 (2)Health knowledge

0 (0)6 (2)3 (1)11 (3)19 (5)12 (3)31 (9)26 (7)6 (2)18 (5)59(17)

73 (21)Organization outcomes (caremodel)

7 (2)4 (1)7 (2)1 (0)15 (4)1 (0)9 (3)6 (2)38 (11)Cost efficiency

1 (0)1 (0)4 (1)5 (1)11 (3)(Time) efficiency

1 (0)1 (0)2 (1)1 (0)1 (0)4 (1)Quality effectiveness

1 (0)1 (0)Productivity

2 (1)13 (4)4 (1)26 (7)2 (1)2 (1)43(12)

6 (2)Less hospitalization

1 (0)1 (0)Reduced comanagement

2 (1)1 (0)2 (1)2 (1)3 (1)2 (1)6 (2)6 (2)Implementation enablers /barriers (including ethical)

1 (0)2 (1)1 (0)3 (1)1 (0)Improve office visits / replaceface-to-face consult

3 (1)2 (1)5 (1)Improve access difficulties

0 (0)5 (1)1 (0)23 (7)1 (0)22 (6)0 (0)22 (6)0 (0)19 (5)2 (1)91 (26)Technical outcomes

3 (1)10 (3)9 (3)6 (2)7 (2)35 (10)Feasibility

6 (2)4 (1)6 (2)5 (1)21 (6)Usability

J Med Internet Res 2015 | vol. 17 | iss. 3 | e77 | p.16http://www.jmir.org/2015/3/e77/(page number not for citation purposes)

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Wildevuur SE, Simonse LWL. Information and Communication Technology–Enabled Person-Centered Care for the “Big Five” Chronic Conditions: Scoping Review J Med Internet Res 2015;17(3):e77

HEALTH PROFESSIONAL AND ORGANIZATION OUTCOMES

RESEARCH AT FONDATION BROCHER

ICT-enabled Person Centred Care in daily practice of chronic disease management

RESEARCH AT FONDATION BROCHER febr-apr 2015

Cancer as illustration: Analyzing articles (n=67) on how ICT enables Person-Centred Care for the management of cancer.

RESEARCH AT FONDATION BROCHER

Cancer is one of the main types of noncommunicable chronic diseases and the condition is a leading cause of disease worldwide.

The incidence of cancer will increase to 23.6 million new cases each year by 2030.

With improvements in early detection, diagnosis and treatment of cancer, people with cancer are living longer and their cancer may be managed as a chronic illness.

WHY CANCER?

FREQUENCY OF OCCURENCY

NVIVO

‘WHAT WAS GOING ON?’

Gioia, D. A., K. G. Corley and A. L. Hamilton (2013). "Seeking qualitative rigor in inductive research notes on the Gioia methodology." Organizational Research Methods 16(1): 15-31.

COMPARED INTENDED OUTCOME VS ACTUAL OUTCOME

• Partnership was not supported; • Narrative of patient was not supported; • If we want to ‘empower’ patients and

make them more ‘active’, a lot still has to be done

“[…] in the sample of articles we studied, neither the partnership (between the patient and the health care professional) nor the narrative of the patient was dealt with.

We considered both important ingredients for a person-centered approach of care […].”

PRELIMANARY FINDINGS

© WILDEVUUR SE, THOMESE GCF, FERGUSON JE,

MONTY PYTHON-HOSPITAL SKETCH (1983)

Thank you for your attention

“Technology cannot replace human involvement”

QUESTIONS AND DISCUSSION