e-patient, New usage of IT in controling of disease
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This document discusses the potential for using virtual communities and networks to improve hepatitis care and research in Iran. It outlines several key benefits, such as allowing healthcare providers, patients, and caregivers to connect and share information regardless of physical location. This could help pool regional, national, and international expertise to advance treatment and research. The document also discusses how virtual communities have already revolutionized some aspects of healthcare by empowering patients and facilitating collaboration between different stakeholders.
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e-patient, New usage of IT in controling of disease
- 1. New modularity in using of IT to control viral hepatitis in Iran Saeed Safari, M.D. Hepatitis B & C seminar 28th -29th April 2009 Zanjan, Iran
- 2. The key question we must ask is not what technology will be like in the future, but rather ,what we will be like.. .‘ Sherry Turkle
- 3. What do you know about these terms? E-health e-Prescribing e-Scheduling/Booking e-Patients e-Learning e-CME e-Group EHR EMR PHR Virtual Community Peer-to-Peer network Video-conferencing Professional Virtual Communities (PVC) Med-e-Tel conference Medicine 2 Health 2 Telemedicine m- Health (mobile)
- 4. Headlines 1. From Patients to e-Patients 2. Hunters and Gatherers of Medical Information 3. Content, Connectivity, and Community ware 4. Patient-Centered Networks: Connected Communities of Care 5. The Surprisingly Complex World of e-Communities 6. Virtual Research Teams 7. Vision & Ambitious
- 5. e-Patients
- 6. e-Patients “e-Patients represent the new breed of informed health consumers, using the Internet to gather information about a medical condition of particular interest to them. The term encompasses both those who seek online guidance for their own ailments and the friends and family members who go online on their behalf.
- 7. Hunters and gatherers of medical information
- 8. “Dr. Google” phenomenon! When turning to the Internet for health and medical information, most e-patients operate as “hunter-gatherers” using search engines to find the resources they seek the “Dr. Google" phenomenon.
- 10. Some Influencing Factors Gender: women are more likely to search for specific diseases and other medical problems, reflecting their traditional role as family health caregivers. Men are more likely to search for information relating to sexual health, drugs. alcohol, and smoking. Expertise increases with use.
- 11. Three categories of e-Patients: The Well: (60 to 65 percent) The well and their Care givers The Acute: (5 to 6 percent) Those facing a New Medical Challenge and their Care givers The Chronic: (30 to 35 percent) Those with Chronic but stable illnesses and their Caregivers
- 12. Comparison The e-Patients Population Their net Traffic
- 13. Empowerment level An e-patient's empowerment level is related to two independent factors—the severity of their condition and their attitude toward their physician: The Accepting, (“doctor--dependent and uninformed”) The Informed, (“doctor--dependent but informed”) The Involved (“junior medical partners”) The In control (“autonomous patients”) Carina von Knoop and her colleagues at the Boston Consulting Group
- 14. Severity of Condition In Control Internet Usage Moderate Involved Informed Low Accepting
- 15. What e-Patients Like Best: Most e-patients appear to be quite satisfied with most aspects of their experiences using online health resources: 82 percent frequently found the information they are looking for online 61 percent said that online information improved the way they take care of themselves
- 17. How to determine the correct tests and treatments
- 18. More in-depth information about the quality of care provided
- 19. The ability to schedule doctor appointments online
- 20. Direct Internet access to online doctors.
- 21. Free access to fee-only online medical journals
- 22. More information about drug interactions
- 23. Online diagnostic tools or “symptom finders"
- 24. Access to my medical records and test results
- 26. Patient-Driven Healthcare: seven Preliminary conclusions 1. e-Patients have become valuable healthcare resources and providers should recognize them as such. 2. The art of “empowering” patients is trickier than we had thought. 3. We have underestimated patients' ability to provide useful online resources. 4. We have overestimated the hazards of imperfect online health information. 5. whenever possible, healthcare should take place on the patient's “turf.” 6. Clinicians can no longer go it alone. 7. The most effective way to improve healthcare is to make it more collaborative.
- 27. Patient-centered networks: connected communities of care
- 28. My Personal network Weak Tie
- 29. Patient-centered support Patient-centered support Networks in serious illness Providing continuing support for the incurable Web sites support Patient-Centered Online Health Networks
- 30. The function is similar to immune system Our personal online health networks function as a social version of our body's immune system,” Alan Greene concludes. ‘Different parts of it spring into action in response to a variety of different medical challenges. And without it, we would be at much greater risk of needless cost, suffering, morbidity, and mortality.”
- 31. The surprisingly complex world of e-communities
- 32. Who then can so softly bind up the wound of another as he who has felt that same wound himself? Thomas Jefferson
- 33. Virtual communication with all health care providers such as: Pharmacists Social Workers Physical therapist Dieticians Virologists Genetics specialist …
- 35. Hospitals,
- 37. labs
- 40. Reverse the history by virtual networks!!!
- 41. Architecture of virtual community Virtual Community Benefit & Pitfall Analysis
- 42. Virtual health care communities aim to : Support patients, caregivers, families and health care providers Facilitate information exchange Provide support and enhance communication among people who do not have to be physically present at the same time at one location.
- 43. Secret of Success:Feeling of ownership by members Members of such a community need to claim ownership of the community so that they can be encouraged to provide constructive critiques and improve overall performance
- 44. A paradigm shift in Healthcare system Advanced technologies that enable people to communicate and form virtual teams and communities can revolutionize the health care field and support a paradigm shift, namely the shift from institution-centric to patient-centric or consumer-centric systems.
- 45. Impact of virtual health care communities Policy, ethical and legal issues associated with virtual health care communities will have to be addressed. Extensive research initiatives are needed that will determine the impact of virtual health care communities on clinical outcomes, the overall process and quality of and access to care.
- 47. Virtual research teams The Internet and other advanced technologies enable health care researchers to communicate and exchange information. One such pioneering initiative is create a virtual community of hepatitis researchers with access to a vast array of previously unavailable scientific data .
- 48. Virtual research teams This international initiative labeled the Strategic Framework, aims to revolutionize medical science by fostering a new context of information exchange and creating a large virtual research community.
- 49. Consumers can be central to the [medical] research endeavor. We can be a catalyzing force for translating research into the services we desperately need, such as treatments, technologies to alleviate suffering, and clinical methods of dealing with the conditions Sharon Terry
- 50. From Passive Patients to Active Researchers A Research-Oriented Online Support Community
- 51. As more and more patients gather, process, and publish their own medical data and coordinate recruitment for clinical studies, the relationships between researchers and patients will change dramatically. Gilles Frydman
- 52. Virtual disease management Utilization of information technologies such as the Internet to allow patients suffering from chronic conditions to stay at home and be involved in the care delivery process. Such technologies can link home care with hospital and ambulatory care, and facilitate information exchange and communication between patients, family members and care providers.
- 53. Online Groups supplement, but Don't Replace, Doctors Doctors' abilities to advise patients on an ongoing treatment plan were highly valued, as were their technical knowledge and their capacity for support and empathy. Doctors were best at what the groups were worst at, and vice versa. The combination of a good doctor and a good support group might offer e-patients the best of all possible worlds.
- 54. And… Providing continuing support for the Incurable e-Groups Are Always There Special Benefits for Those with Rare Conditions A Godsend for Those with Limited Access to Professional Care Keeping Up on the “state of the Art” for Your Condition
- 55. Regional e-community Iran Hepatitis Network
- 56. International e-communityGlobal Hepatitis Network
- 58. Imagine a world without geographical barriers in Hepatitis research and treatment.
- 59. A world where regional, national and international expertise are pooled into a single, easy-to-access resource.
- 60. A world where time and distance are not seen as obstacles to hepatitis care and research
- 61. A world that encourages direct collaboration for hepatitis professionals to help patients who would normally not have that chance
- 62. Dr. Robert NoyceIntel cofounder “Don’t be encumbered by the past. Go out and do something wonderful”
Editor's Notes
- The key question we must ask, Turkle suggests, “...is not what technology will be like in the future, but rather, what will we be like.. .“ when we have learned to live and work appropriately within the new tech nocultural environments even now being created by our new technologies. For the healthcare of the future—if it is to survive—will be as novel and unexpected to those of us trained as clinicians in 20th Century medicine as today's computer-toting knowledge workers would have been to the social planners of the 1 940s and 50s. We hope that the chapters that follow provide our readers with some interesting and useful perspectives on these questions.
- Our first generation of e-patients becomes more experienced with the Internet, they are becoming more proficient and capable power users, more skilled at searching, more likely to use e-mail for serous purposes such as seeking or providing health advice. They are also more likely to post online content for other patients.”
- Carina von Knoop and her colleagues at the Boston Consulting Group have proposed another extremely insightful and useful e-patient typology According to their model,
- To get a sense of your own personal online network, you need look no farther than your own e-mail inbox and outbox. According to a classification system proposed by Haythornthwaite,1 those with whom you communicate weekly or more often are defined as your closest ties: your weekly to monthly contacts are your significant ties: and those with whom you communicate monthly or less frequently are your extended ties. In addition, you may sometimes correspond on a one-time or short-term basis with friends of friends, or others you have “met” online (a weak tie link.)
- Whether such communities are based on moderated or non-moderated discussions, it is important to have a clear, published and easily accessible set of rules and regulations or code of conduct for the members of the virtual community.
- Gilles Frydman concurs. ‘Some uninsured and offshore members of our lists have told me that their online support group is their only source of medical guidance. Many English members of the breast cancer groups learned about Herceptin years before the anti-cancer agent was approved in the UK. A number of foreign patients suffering from gastrointestinal stromal tumor (GIST) learned about an early-stage European clinical trial long before the trial was listed in the NCI's PDQ database. Such help is increasingly available to the unwired.” Karen Parles agrees, UA number of my fellowm members at the Lung-Onc group don't own computers themselves. They link to the Internet via their public libraries.”