Information systems for health decision making - a citizen's perspective


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We make health decisions everyday. We get our information from the Internet. As a society we are investing large amounts of funding for the health information systems. In this presentation, I tried to look from the perspective of a citizen and tried bringing a different perspective.

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Information systems for health decision making - a citizen's perspective

  1. 1. Health, Health Care and Health Information Systems A Citizen’s Pitch to Information Technology Decision Makers Erdem Yazganoglu, MD, MA, MHSc 2010 1
  2. 2. What am I going to talk about? • • • • Establishing Ground Rules How did we come where we are? Where are we now? What does future look like? The objective of this presentation is to create discussion; the ideas are purposefully exaggerated. Use of first person is intentional to increase the drama. 2
  3. 3. Establishing Ground Rules 1. The objective of the health care system is to improve my health and provide me with a comfortable death. 2. The objective of every information system is to support decisions. 3. The objective of health information systems is to support health care decisions. 4. In health care delivery, every activity I spend money on can be considered a health care intervention and health information systems are also health interventions. 5. Any activity that does not have sufficient cost-benefit to me and my community should not be maintained. 6. Any record that health care system has about me is mine, I should be able to decide what to do with it. 7. Only I can make a change in my life for better health, nobody else can. So my health decisions are the most important one for me. 3
  4. 4. Historical Development of Canadian Health Care Sector • • • • • • • • • Hospital Insurance Medically necessary services only Expand to include pharmaceuticals and some home care Can still be considered as “Sickness Care” Engrained professional hierarchy, I am (the citizen/patient) the lowest level in the hierarchy. Historically, there was a great gap in medical knowledge between professionals and patients. Knowledge gap between patient and professionals created a paternalistic relationship. However, I am living in a country that has one of the highest literacy levels in the world and I am now very well informed. Paternalistic relationship has been dying everywhere in the society and I want the same relationship with my health care providers. 4
  5. 5. Historical Development of Health Information Systems • Information system development follows the same route, starts from the hospitals – patient registration, operating room systems, scheduling systems, radiology systems, laboratory systems, order entry systems, clinical decision support system, etc. • Health care professionals’ information needs are the primary concern. • Objective is to integrate sickness data to support decisions of the health care providers for better health care for patients • Billions of dollars are committed and spent. • Expectations are cost effectiveness through higher quality of care and reduced adverse events for patients and increased productivity and efficiency for health system – still requires evidence. 5
  6. 6. If hospital systems are successful, what percentage of population benefit from it? 6 Source: BC Ministry of Health, 2009
  7. 7. If hospital systems are successful, how many of the 24,000 lives can be saved and for how long? Baker et al. (2004) The Canadian Adverse Events Study: the incidence of adverse events among hospital patients in Canada, Canadian Medical Association Journal, May 25, 2004; 170 (11), pp:1678-1686 7
  8. 8. Health is a combination of a multitude of factors 8
  9. 9. Who makes the decisions? Adapted from: Eby and Kilo, IHI National Forum, Dec 2006 9
  10. 10. When we decide, where do we get our information? • The primary source for information is Internet, not health care providers – significantly age dependent • Adults aged 18 to 34 were more than 10 times as likely, and adults 35 to 64 years were more than 5 times as likely to say they trust information in the internet than 65 years and older group. Hesse et al. (2005) Trust and Sources of Health Information - The Impact of the Internet and Its Implications for Health Care Providers: Findings 10 the From First Health Information National Trends Survey, Archives of Internal Medicine, No.165, pp:2618-2624
  11. 11. Has the source of information changed? • • • Patients still highly trust their physicians but using them less and less as an information source. Internet, although not trusted, still the primary source for cancer information and shows further increases from 2005 to 2008. If this is for cancer, what about other conditions? Hesse B, Moser, R. (2010) Survey of Physicians and Electronic Health Information New England Journal of Medicine, Vol 11 362 No 9, pp 860, March 4, 2010
  12. 12. Gap between Providers and Patients • A lack of interactive communication technologies available in the Internet • A lack of health care professional production of the information on the Internet • A lack of interaction between these professionals and patients on the Internet. Lupianez-Villanueva, F (2009) Opportunities and Challenges of Web 2.0 within the health care systems: An empirical explanation, Informatics for Health and Social Care, September 2009, 34(3): 117-126 12
  13. 13. Gap between cultures driving initiatives Culture of Web 1.0 Culture of Health Services? Culture of Health Information Technology Implementation? Hierarchy Professional Impersonal Audience Authoritative Laws Planned Provider generated content Regulated and Monitored Large number of customers for few employees Formal Top-Down Vertical Command and Control Managers/Professionals Rule Sequential Clear and Protected boundaries Business to Business (B2B) Culture of Web 2.0 Culture of Health 2.0? Participation Amateur Personal Community Egalitarian Rules Trial and Error Consumer generated content Unregulated and unmonitored Huge number of customers for few employees Informal Bottom Up Horizontal Adapt and Evolve No one (or customers) rule Self-organizing Porous and Amorphous boundaries Peer to Peer (P2P) Adapted from: Stan Davies (2008) Health Care Leaders Association Conference, Vancouver, BC 13
  14. 14. What are barriers? Overt and Known: Maintaining patient privacy and confidentiality Covert and Unknown: Changing roles and unease with this Kim J and Kim S (2009) Physician’s perceptions of the effects of Internet health information on the doctor – patient relationship, Informatics for Health and Social Care, Vol:34, No.3, September 2009, pages 136 - 148 14
  15. 15. What about the information Patient’s got from the Internet? • • • • • • • They check the quality of the information and don’t discuss ones that they believe does not have high quality They use it only for their own purpose They don’t discuss it if they don’t have a physician or the time of consultation is too short They don’t want to challenge the position of the health care provider being the sole voice of medical expertise in a consultation They don’t want to be embarrassed, laughed at, seen negatively or seen as overly concerned. They have seen providers who are not listening, being dismissive, uninterested, or not open to the information due to its source. In order to save face, they sometimes present the information without telling that it is from the Internet. Imes, R. S. et al. (2008) Patients’ Reasons for Refraining from Discussing Internet Health Information with their Healthcare Providers, Health Communication, 23:6, 538-47 15
  16. 16. Reframing • • • • • • • The objective of health information systems should be to support all health decisions, not only health care decisions. The decisions that needs to be supported are patients and/or citizen’s health decisions because they affect many, made more often, and has long term consequences. The elephant in the room is the patient and citizen, similar to other aspects in health care we always fight for the patient without knowing what they actually want and think. Health information and support for health decisions should be carried as close as possible to the patient. Integration of health record will/should occur through Personal Health Record (PHR), because fundamentally patient is the only stakeholder of that record and also the only person with vested interest. Currently, health care sector is not ready to embrace social media and the information gap between the society and health care system will continue to increase. In order for heath services to provide more benefit, they need to find a way to be in patient/citizen’s social network. If EMR is going to be implemented, the one of the first modules to be implemented must be the patient portal. An EMR that doesn’t have a patient portal is excluding the most important stakeholder of that system. 16
  17. 17. Rhetorical Questions 1. 2. 3. 4. Your primary care physician came and asked you to contribute money to his EMR’s purchase and maintenance, how much would you be willing to pay? A PHR provider came to you and asked money to provide your medical record under your finger tips, how much would you be willing to pay? Do you know any EMR implementation project that used Social Media? Does your EMR selection process has any Web 2.0 requirements? Do you have an EMR (EHR) 2.0? I really want to hear about it. 17
  18. 18. Summary Points • • • • • • • Individuals make the majority of health decisions without the help of health care professionals. Timely and valuable information should be available, if health care system serious about keeping them healthy. Health care providers tends to be weary about the information individuals get from the Internet but health care providers are not easily reachable through web 2.0 tools Information system investments are directed to improve hospital systems where few in population with complex conditions benefit through health care providers. Information system technologies are not developed to link health care providers with the patients. Information system projects should be viewed as any other health care intervention and should not be funded unless there is demonstrable net health benefit. There is a culture gap between what health care providers are used to and comfortable with and what patients are doing and expecting. 18