Associate Professor Department of Health Policy, Management and Evaluation, University of Toronto; Senior Scientist , Centre for Global eHealth Innovation, Division of Medical Decision Making and Health Care Research; Toronto General Research Institute of the UHN, Toronto General Hospital, Canada eHealth Transforming the dynamics of a complex health system (from a sickness model to a wellness model) Gunther Eysenbach MD MPH Gunther Eysenbach MD MPH

Traditional hospital-based health care system Obesity

What’s are the health care issues in Australia? An informal survey (on the plane) “ Mental health is in crisis” “ Surgical waiting lists remain long” “ Private health insurance is becoming increasingly unaffordable.” “ We have a chronic shortage of doctors and nurses.” “ Obesity in children is becoming a real problem” These are ALL problems where eHealth plays a critical role

“ Mental health is in crisis”

“ Surgical waiting lists remain long”

“ Private health insurance is becoming increasingly unaffordable.”

“ We have a chronic shortage of doctors and nurses.”

“ Obesity in children is becoming a real problem”

• focussing on preventative health care and health promotion, to help keep Australians healthy and out of hospital

These are ALL problems where eHealth plays a critical role

Copyright ©2006 BMJ Publishing Group Ltd. Thun, M. J et al. Tob Control 2006;15:345-347 http://tobaccocontrol.bmj.com/cgi/content/full/15/5/345 Between 1991-2003, cancer mortality decreased by 12% 40% of this decrease is attributed to smoking cessation The importance of behavior change and prevention…

eHealth can support behavior change and prevention

The importance of behavioral factors and preventive medicine More than one third of cancer deaths are attributable to nine modifiable risk factors The 9 factors are: smoking , high body mass index, low fruit and vegetable intake, physical inactivity, alcohol use, unsafe sex, urban air pollution, indoor use of solid fuels, and injections from healthcare settings contaminated with hepatitis B or C virus. Lancet. 2005;366:1784-1793

More than one third of cancer deaths are attributable to nine modifiable risk factors

The 9 factors are: smoking , high body mass index, low fruit and vegetable intake, physical inactivity, alcohol use, unsafe sex, urban air pollution, indoor use of solid fuels, and injections from healthcare settings contaminated with hepatitis B or C virus.

Rewarding healthy lifestyle with “Healthmiles”

“ Cancers that affect Indigenous Australians to a greater extent than other Australians are largely preventable (eg, through smoking cessation, Pap smear programs and hepatitis B vaccination). “ Condon et al. MJA 2004; 180 (10): 504-507 http://www.mja.com.au/public/issues/180_10_170504/con10102_fm.html

What is eHealth? eHealth = Telemedicine? (NO!) eHealth = Medical Informatics? (NO!) eHealth = Electronic Health Records? (NO!)

eHealth = Telemedicine? (NO!)

eHealth = Medical Informatics? (NO!)

eHealth = Electronic Health Records? (NO!)

eHealth is NOT telehealth "cost-effectiveness of telemedicine and telehealth improves considerably when they are part of an integrated use of telecommunications and information technology in the health sector." [1] telemedicine remains linked to medical professionals , while e-health is driven by consumers [4] Mitchell J. Increasing the cost-effectiveness of telemedicine by embracing e-health. J Telemed Telecare. 2000;6 Suppl 1:S16-9. Mitchell J. From telehealth to e-health: the unstoppable rise of e-health, Canberra, Australia: National Office for the Information Technology, 1999. http://www.noie.gov.au/projects/ecommerce/ehealth/rise_of_ehealth/unstoppable_rise.htm Rosen E. The death of telemedicine? Telemed Today 2000; 8(1):14-17 Allen A. Morphing Telemedicine - Telecare - Telehealth - eHealth. Telemed Today, Special issue: 2000 Buyer's Guide and Directory, 2000, 1; 43.

"cost-effectiveness of telemedicine and telehealth improves considerably when they are part of an integrated use of telecommunications and information technology in the health sector." [1]

telemedicine remains linked to medical professionals , while e-health is driven by consumers [4]

Mitchell J. Increasing the cost-effectiveness of telemedicine by embracing e-health. J Telemed Telecare. 2000;6 Suppl 1:S16-9.

Mitchell J. From telehealth to e-health: the unstoppable rise of e-health, Canberra, Australia: National Office for the Information Technology, 1999. http://www.noie.gov.au/projects/ecommerce/ehealth/rise_of_ehealth/unstoppable_rise.htm

Rosen E. The death of telemedicine? Telemed Today 2000; 8(1):14-17

Allen A. Morphing Telemedicine - Telecare - Telehealth - eHealth. Telemed Today, Special issue: 2000 Buyer's Guide and Directory, 2000, 1; 43.

eHealth is not medical (clinical) informatics Eysenbach G: Consumer health informatics. BMJ 2000;320:1713-16

Jennings K, Miller K, Materna S. Changing health care. Santa Monica: Knowledge Exchange, 1997 Smith R. The future of healthcare systems. BMJ 1997 May 24;314(7093):1495-6

www.jmir.org G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

„ e-Health (...) refers to health services and information delivered or enhanced through the Internet or Internet-related technologies. In a broader sense, the term characterizes not only a technical development, but also a state-of-mind, a way of thinking, an attitude, a commitment for networked, global thinking, to improve health (care) worldwide by using information and communication technology .“ What is e-health? G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities, patient involvement, and home care. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20 4 of 10 prescriptions taken by a patient are not known by any physician 1 of 7 admissions result from missing information in emergency rooms 1of 5 lab and xray tests are duplicates because of retrieval barriers 1 of 5 deaths would be prevented if screening information were available

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities, patient involvement, and home care.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

4 of 10 prescriptions taken by a patient are not known by any physician

1 of 7 admissions result from missing information in emergency rooms

1of 5 lab and xray tests are duplicates because of retrieval barriers

1 of 5 deaths would be prevented if screening information were available

Efficiency and cost savings through home care? Romanov Comission Interim Report, 2002

Intelligent Home Care System Care-O-bot ( Fraunhofer Institute for Manufacturing Engineering and Automation )

http://www.vivometrics.com/

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

eHealth enhances quality by Enabling the integration of reminders, guidelines, evidence-based resources into EHRs Enabling benchmarking Empowering patients

Enabling the integration of reminders, guidelines, evidence-based resources into EHRs

Enabling benchmarking

Empowering patients

Enhancing quality through consumer “control”

Dr. med. G. Eysenbach (ey@yi.com) Universität Heidelberg, Abteilung für Klinische Sozialmedizin, Forschungsgruppe Cybermedizin Patienteninformation per Internet - eine Herausforderung für den Arzt

Enhancing quality

Patients, Physicians and the Internet The Boston Consulting Group, 2001

How do consumers search and appraise health information on the web today? My computer told me that I can trust you, based on the ratings of your previous patients...

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

Evidence-based eHealth: There is still a dearth of evidence

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

Globalization – geographic distances are meaningless

Homework tutors in Bangalore… … think about the possibilities for health

Changing delivery of care J. E. Gray, C. Safran, R. B. Davis, G. Pompilio-Weitzner, J. E. Stewart, L. Zaccagnini, D. Pursley. Baby CareLink: using the internet and telemedicine to improve care for high-risk infants. Pediatrics 106 (6):1318-1324, 2000.

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

Promises & Challenges: 10 E‘s in e-health 1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement. 2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers. 3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated. 4. E mpowerment of consumers and patients 5. E ncouragement of a partnership between patient and health professional 6. E ducation of physicians and consumers through online sources 7. E nabling information exchange and communication in a standardized way between health care establishments. 8. E xtending the scope of health care beyond its conventional boundaries. 9. E thics – quality of content, informed consent, privacy and equity issues. 10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”. G. Eysenbach. What is eHealth? J Med Internet Res 2001; 3(2):e20 http://www.jmir.org/2001/2/e20

1. E fficiency –decreasing costs by avoiding duplicative or unnecessary interventions, through enhanced communication possibilities and patient involvement.

2. E nhancing quality of care –by increasing transparency, involving consumers as quality assurance power, and directing patient streams to the best quality providers.

3. E vidence based - e-health interventions should undergo rigorous scientific evaluation and the effectiveness of online interventions should be demonstrated.

4. E mpowerment of consumers and patients

5. E ncouragement of a partnership between patient and health professional

6. E ducation of physicians and consumers through online sources

7. E nabling information exchange and communication in a standardized way between health care establishments.

8. E xtending the scope of health care beyond its conventional boundaries.

9. E thics – quality of content, informed consent, privacy and equity issues.

10. E quity – making health care more equitable without deepening the gap between the ”haves” and ”have-nots”.

Empowerment, Education, Enabling Partnership General health information on the web Electronic clinical practice guidelines for health professionals and patients Tailored, personalized online Information Professional education: CME Social Networking applications (e.g. Sermo) add a new dimension Patient-accessible (web-based) Electronic Health Records, Patient Portals

General health information on the web

Electronic clinical practice guidelines for health professionals and patients

Tailored, personalized online Information

Professional education: CME

Social Networking applications (e.g. Sermo) add a new dimension

Patient-accessible (web-based) Electronic Health Records, Patient Portals

Where clinical and preventive ehealth services meet: PHAs Clinical Medicine Health Care Delivery Preventive Medicine Public Health Personal Health Applications Patient Portals EHR/PHR Eysenbach 2008

© Gunther Eysenbach Patient data External evidence General health information Individual health information Literature Mass Media Internet Health Record Personally Relevant Health Information (PH) Patient Physician as infomediary Patient accessible electronic health records Medical knowledge

Key Consumer Health Informatics Developments: “PH”-applications Patient-Accessible Electronic Health Records (PAEHR) Personal Health Record (PHRs) Personally Controlled Health Record (PCHR) Personal Health Applications (PHA) PHR 2.0

Patient-Accessible Electronic Health Records (PAEHR)

Personal Health Record (PHRs)

Personally Controlled Health Record (PCHR)

Personal Health Applications (PHA)

PHR 2.0

PAEHR Patient Access to Electronic Health Record Access to their (paper) record is a legal right for patients in most countries However, how “accessible” are electronic records? PAEHR represents the least common denominator (there should be at least access to the provider-held EHR) A misnomer - In practice, patients should not only have access, but also rights to annotate, export, and share the information, and the information should go beyond the “raw” EHR information

Patient Access to Electronic Health Record

Access to their (paper) record is a legal right for patients in most countries

However, how “accessible” are electronic records?

PAEHR represents the least common denominator (there should be at least access to the provider-held EHR)

A misnomer - In practice, patients should not only have access, but also rights to annotate, export, and share the information, and the information should go beyond the “raw” EHR information

PAEHR – Patient Access to Electronic Health Record BEFORE access Patients generally enthusiastic about the idea Health providers skeptical/concerned AFTER giving access Patients sobered (far less enthusiastic in terms of assessing how useful their record is to them) Health providers less concerned

BEFORE access

Patients generally enthusiastic about the idea

Health providers skeptical/concerned

AFTER giving access

Patients sobered (far less enthusiastic in terms of assessing how useful their record is to them)

Health providers less concerned

Patient data External evidence General health information Individual health information Literature Mass Media Internet Health Record Personally Relevant Health Information (PH) Patient Physician as infomediary Patient accessible electronic health records Medical knowledge

PHRs

PHRs

AHIMA Definition of PHR " The personal health record (PHR) is an electronic, universally available, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from the health care provider and the individual. The PHR is maintained in a secure and private environment, with the individual determining the rights of access. The PHR is separate from and does not replace the legal record of the provider.“ AHIMA e-HIM Personal Health Record Work Group. "The Role of the Personal Health Record in the EHR." Journal of AHIMA 76, no.7 (July-August 2005): 64A-D. http://www.webcitation.org/5Vlj7zE7E

" The personal health record (PHR) is an electronic, universally available, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from the health care provider and the individual. The PHR is maintained in a secure and private environment, with the individual determining the rights of access. The PHR is separate from and does not replace the legal record of the provider.“

PHRs – Markle Definition “ "The Personal Health Record (PHR) is an Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it. PHRs offer an integrated and comprehensive view of health information, including information people generate themselves such as symptoms and medication use, information from doctors such as diagnoses and test results, and information from their pharmacies and insurance companies. (…) People can use their PHR as a communications hub : to send email to doctors, transfer information to specialists, receive test results and access online self-help tools. " Markle Foundation ( http://www.markle.org/downloadable_assets/final_phwg_report1.pdf http://www.webcitation.org/5Vmpga1nD )

“ "The Personal Health Record (PHR) is an Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it. PHRs offer an integrated and comprehensive view of health information, including information people generate themselves such as symptoms and medication use, information from doctors such as diagnoses and test results, and information from their pharmacies and insurance companies. (…) People can use their PHR as a communications hub : to send email to doctors, transfer information to specialists, receive test results and access online self-help tools. "

Markle Foundation ( http://www.markle.org/downloadable_assets/final_phwg_report1.pdf http://www.webcitation.org/5Vmpga1nD )

PHR In some concepts, the PHR includes the patient’s interface to a healthcare provider’s electronic health record (EHR). In others, PHRs are any consumer/patient-managed health record. “ This lack of consensus makes collaboration, coordination and policymaking difficult. It is quite possible now for people to talk about PHRs without realizing that their respective notions of them may be quite different.” Report recommendation from the National Committee on Vital and Health Statistics “Personal Health Records and Personal Health Record Systems” http://www.ncvhs.hhs.gov/0602nhiirpt.pdf http://www.webcitation.org/5VlINiXs3 (Feb, 2006).

In some concepts, the PHR includes the patient’s interface to a healthcare provider’s electronic health record (EHR).

In others, PHRs are any consumer/patient-managed health record.

“ This lack of consensus makes collaboration, coordination and policymaking difficult. It is quite possible now for people to talk about PHRs without realizing that their respective notions of them may be quite different.”

EMR “ Tethered” PHR/ PAEHR “ stand-alone” PHR PHR EMR Read only Read+Write/Annotate PHR PHR © Gunther Eysenbach, CC-BY

EMR EMR PHR Different providers “ interconnected” PHR © Gunther Eysenbach, CC-BY PHR PHR

Records at Financial institutions Personal Finance Records © Gunther Eysenbach, CC-BY

Tang et al, JAMIA 2006

PHRs Fragmented health care: individuals’ health records are typically distributed among different insurers and providers. PHR adds patients as actor to ensure medical records are accessible, correct, and uptodate. Environmental Scan of PHR http://dhhs.gov/healthit/ahic/materials/meeting11/ce/EnvScan_PHRmarket.pdf http://www.webcitation.org/5VlI2zIqe

Fragmented health care: individuals’ health records are typically distributed among different insurers and providers.

PHR adds patients as actor to ensure medical records are accessible, correct, and uptodate.

PHR attributes vary widely the scope or nature of the information/contents (e.g. clinical EHR data vs personal observations etc) the source of the information (provider entered, patient entered, automatically collected?) the features and functions offered the custodian of the record the storage location of the contents (web server, USB flash memory, hospital server) the technical approach the party who authorizes access to the information Report recommendation from the National Committee on Vital and Health Statistics “Personal Health Records and Personal Health Record Systems” http://www.ncvhs.hhs.gov/0602nhiirpt.pdf http://www.webcitation.org/5VlINiXs3 (Feb, 2006).

the scope or nature of the information/contents (e.g. clinical EHR data vs personal observations etc)

the source of the information (provider entered, patient entered, automatically collected?)

the features and functions offered

the custodian of the record

the storage location of the contents (web server, USB flash memory, hospital server)

the technical approach

the party who authorizes access to the information

Report recommendation from the National Committee on Vital and Health Statistics “Personal Health Records and Personal Health Record Systems” http://www.ncvhs.hhs.gov/0602nhiirpt.pdf http://www.webcitation.org/5VlINiXs3 (Feb, 2006).

Current challenges of PH applications Portals, PHRs etc currently repeat the fragmentation in health care few initiatives actually span different institutions Data standards, terminology, messaging, content Consumer health vocabulary versus professional vocabulary (jargon) Privacy Impact on outcomes? Difficult to show an impact on health outcomes The most relevant outcome measure is perhaps trust Incentives: Consumers are not intrinsically motivated to enter information esp. if nobody reviews it – who will do that job? Tax-incentives Are people willing and able to take on that responsibility for their health (not all are)?

Portals, PHRs etc currently repeat the fragmentation in health care

few initiatives actually span different institutions

Data standards, terminology, messaging, content

Consumer health vocabulary versus professional vocabulary (jargon)

Privacy

Impact on outcomes?

Difficult to show an impact on health outcomes

The most relevant outcome measure is perhaps trust

Incentives:

Consumers are not intrinsically motivated to enter information esp. if nobody reviews it – who will do that job?

Tax-incentives

Are people willing and able to take on that responsibility for their health (not all are)?

Consumer Accountability

US system vs non-US In the US, consumers are concerned about possible misuse of PHR data by insurance providers or employers [1] Less a concern in a system of universal health coverage Less a concern if PHR systems are not offered by employers, but by healthcare organizations and/or the government US users are willing to pay [1,2] (may not be the case in systems where users are not used to the idea) US public ideologically less interested in equity [3] Excluding disadvantaged populations may be a bigger concern in non-US countries http://www.projecthealthdesign.org/media/file/Massoudi.pdf Adler KG. Web Portals in Primary Care: An Evaluation of Patient Readiness and Willingness to Pay for Online Services J Med Internet Res 2006;8(4):e26 <URL: http://www.jmir.org/2006/4/e26/> http://www.mja.com.au/public/issues/179_09_031103/lee100203_fm.html

In the US, consumers are concerned about possible misuse of PHR data by insurance providers or employers [1]

Less a concern in a system of universal health coverage

Less a concern if PHR systems are not offered by employers, but by healthcare organizations and/or the government

US users are willing to pay [1,2] (may not be the case in systems where users are not used to the idea)

US public ideologically less interested in equity [3]

Excluding disadvantaged populations may be a bigger concern in non-US countries

http://www.projecthealthdesign.org/media/file/Massoudi.pdf

Adler KG. Web Portals in Primary Care: An Evaluation of Patient Readiness and Willingness to Pay for Online Services J Med Internet Res 2006;8(4):e26 <URL: http://www.jmir.org/2006/4/e26/>

http://www.mja.com.au/public/issues/179_09_031103/lee100203_fm.html

http://en.wikipedia.org/wiki/Image:Web20_en.png

Web 2.0 , a phrase coined by O'Reilly Media in 2004 [1] , refers to a supposed second generation of Internet -based services —such as social networking sites , wikis , communication tools, and folksonomies —that emphasize online collaboration and sharing among users. O'Reilly Media, in collaboration with MediaLive International, used the phrase as a title for a series of conferences and since 2004 it has become a popular (though ill-defined and often criticized) buzzword amongst certain technical and marketing communities. http://en.wikipedia.org/wiki/Web_2.0

Source: http://web2.wsj2.com/

S-Health: Convergence of social networking technologies and e-health S–Commerce: Beyond MySpace and YouTube http://www.competeinc.com/news_events/pressReleases/168/ http://www.webcitation.org/5VuPjJxo5

EMR EMR PHR PHR PHR Different providers PHR 2.0 ® © Gunther Eysenbach, CC-BY Community Other peoples’ PHR Other peoples’ PHR Other peoples’ PHR

Some final thoughts on the implications of “wikinomics” for health care Web 2.0 savvy consumers will push the envelope Just providing a institutions-specific “portal” (or tethered PHR) will not be enough People will have the expectation to be able to do more with their data Patients 2.0 will demand full control over their data

Web 2.0 savvy consumers will push the envelope

Just providing a institutions-specific “portal” (or tethered PHR) will not be enough

People will have the expectation to be able to do more with their data

Patients 2.0 will demand full control over their data

- Tailored Patient Education - Online Health Risk Assessments - Online Support Groups - Discussion Forums Health Care Providers ( Networked ) distributed EHR -eLearning CME Network - Secure Email teleadvice Triage VideoConference - Access to own EHR - Symptom Diaries - Email follow-ups - Mobile Health reminders - Online Rx refills - Online Scheduling for Office Visits - Waiting list management Quality ratings A model for integrated eHealth Care Provider Selection based on eRatings and preferences

Health Care Providers

( Networked )

distributed EHR

-eLearning CME Network

- Secure Email teleadvice

Triage

VideoConference

“ eHealth is not (just) about improving health care , it is about improving health” (Gunther Eysenbach)

Thank you! Dr Gunther Eysenbach, Email: geysenba@uhnres.utoronto.ca, Associate Professor Department of Health Policy, Management and Evaluation, University of Toronto; Senior Scientist , Centre for Global eHealth Innovation, Division of Medical Decision Making and Health Care Research; Toronto General Research Institute of the UHN, Toronto General Hospital, Canada

Complexity in Health Care

Jones, P. (2000) Hodges' Health Career - Care Domains - Model: Health and Social Care Informatics http://www.p-jones.demon.co.uk/infone.htm http://www.webcitation.org/5Vpx3GDuM

http://en.wikipedia.org/wiki/Scale-free_network

World Obesity Map http://www.iaso.org/docs/pdf/review2003.pdf http://www.webcitation.org/5VvwTOs3l

World Carbon Emissions Map

World Happiness Map

“ Healthy” Food Choices http://www.carbonfootprint.com/calculator.aspx

Vegetarian/Organic Food/in-season/local food: -1.5 tonnes White Fish/as above: -1.35 tonnes White meat/as above: -1.2 tonnes Get rid of car and only walk or cycle: -2 tonnes Eating less: -x tonnes The average footprint for people in Australia is 16.3 tonnes. The average for the industrial nations is about 11 tonnes. The average worldwide carbon footprint is about 4 tonnes. To combat climate change the worldwide average needs to reduce to 2 tonnes.

Vegetarian/Organic Food/in-season/local food: -1.5 tonnes

White Fish/as above: -1.35 tonnes

White meat/as above: -1.2 tonnes

Get rid of car and only walk or cycle: -2 tonnes

Eating less: -x tonnes

The average footprint for people in Australia is 16.3 tonnes.

The average for the industrial nations is about 11 tonnes.

The average worldwide carbon footprint is about 4 tonnes.

To combat climate change the worldwide average needs to reduce to 2 tonnes.

“ Unhealthy Food Choices”

“ Unhealthy” choices: 3.547 tonnes

“ Consumers” All persons, sick or well, who seek information and take action in accord with personal preferences, life situations, and individual health goals Broader than “patient” (includes the well, includes agents such as caregivers) Very diverse group Brennan & Safran. Chapter 2 Empowered Consumers. In: Lewis, Eysenbach, Kukafka, Stavri, Jimison. Consumer Health Informatics Springer, 2005

All persons, sick or well, who seek information and take action in accord with personal preferences, life situations, and individual health goals

Broader than “patient” (includes the well, includes agents such as caregivers)

Very diverse group

Empowered consumers Empowerment: granting of power to a dependent group or enhancing an individual’s ability for self-determination “ a social process of recognizing, promoting and enhancing people’ abilities to meet their own needs, to solve their own problems, and mobilize the necessary resources in order to feel in control of their lives” (Gibson, 1991) CHI applications support the ideology of empowered consumers (a power balance in the patient-health professional relationship) e.g. by Informing about health concerns Assisting in finding others with similar concerns Assisting in navigating the health care system Access to clinical records and personal care management tools Brennan & Safran. Chapter 2 Empowered Consumers. In: Lewis, Eysenbach, Kukafka, Stavri, Jimison. Consumer Health Informatics Springer, 2005

Empowerment: granting of power to a dependent group or enhancing an individual’s ability for self-determination

“ a social process of recognizing, promoting and enhancing people’ abilities to meet their own needs, to solve their own problems, and mobilize the necessary resources in order to feel in control of their lives” (Gibson, 1991)

CHI applications support the ideology of empowered consumers (a power balance in the patient-health professional relationship) e.g. by

Informing about health concerns

Assisting in finding others with similar concerns

Assisting in navigating the health care system

Access to clinical records and personal care management tools

Empowered consumers (2) Ideological / philosophical shift in many Western countries partly facilitated through information technology, viewing... lay people / patients not only passive recipients of health care but also active initiators of positive health behavior, organizers and managers of home-based care, and citizens engaged in community-based activities for health promotion and prevention Brennan & Safran. Chapter 2 Empowered Consumers. In: Lewis, Eysenbach, Kukafka, Stavri, Jimison. Consumer Health Informatics Springer, 2005

Ideological / philosophical shift in many Western countries partly facilitated through information technology, viewing...

lay people / patients not only passive recipients of health care

but also active initiators of positive health behavior, organizers and managers of home-based care, and citizens engaged in community-based activities for health promotion and prevention

Empowerment (political science view) Key dimensions (Melville, 1997): Information (e.g. about health concerns) Access (e.g. to resources) Choice (e.g. of resources) Representation (in decisions about structure and deployment of resources) Redress of grievances (mechanisms to address concerns how ressources are used) CHI is one facilitator for empowerment, but other dimensions need to be addressed too Brennan & Safran. Chapter 2 Empowered Consumers. In: Lewis, Eysenbach, Kukafka, Stavri, Jimison. Consumer Health Informatics Springer, 2005

Key dimensions (Melville, 1997):

Information (e.g. about health concerns)

Access (e.g. to resources)

Choice (e.g. of resources)

Representation (in decisions about structure and deployment of resources)

Redress of grievances (mechanisms to address concerns how ressources are used)

CHI is one facilitator for empowerment, but other dimensions need to be addressed too