1. Health Information on the Internet: Economics, Regulation, Policy & Ethics Yale M. Braunstein, Ph.D.

2. Yale M. Braunstein Professor, School of Information Management and Systems and Health Services and Policy Analysis Group, University of California, BerkeleySchool of Information Management and Systems Health Services and Policy Analysis GroupUniversity of California, Berkeley

3. Lecture Outline  Economics & Pricing  Regulation  Ethics  Sample Policy Areas Information about health and medicine is increasingly available on the Internet. This lecture focuses on:

4. Economics of Information Provision Why economics matters? The funding of the information source can influence the content Prices, if any, influence who will have access to the information Access to health information is related to the the provision of medical care and the overall level of health

5. Pricing Information (1)  How to price information? by byte by advertising by subscription hybrid schemes (such as storing and using advertising credits)  All (and more) will be used

6. Pricing Information (2)  Product-line development  Economies of scale  Economies of scope

7. Regulation  Regulation of the content of health and medical information can be viewed as ancillary to the regulation of service delivery.  Another model is to apply regulatory models from other areas—consumer product safety, privacy, etc.

8. Ethical and Legal Concerns May Be Different  Not everything that is legal is ethical  Not everything that is ethical is legal Ethics is based in cultures and sub-cultures is different from good taste may or may not be related to intent is related to context

9. Sample Policy Areas  Privacy & Security  Intellectual Property  Control of Information  Licensure & Liability

10. Policy: Privacy  Multiple aspects to privacy annoyance actuarial information willingness to pay damages to character  Consumers value privacy -- therefore it has an economic dimension  Consumers could trade privacy for prices define a property right in privacy

11. Confidentiality, Privacy and Security (1)  Current “standards of care” may be changing as they depend on customary practices, ethics codes, and law  Practitioners need to understand practical, technical, and legal limits of the technology  Patients may need to be informed of limits to privacy and privilege

12. Confidentiality, Privacy and Security (2)  Doctor-patient privilege applies to communications in the course of diagnosis or treatment  Does it apply when requesting or providing advice over the Internet?  There is a duty to maintain confidentiality Is this possible over the Internet? When using a cellular telephone?

13. Confidentiality, Privacy and Security (3)  U.S. federal law specifically permits operators of online services to monitor e- mail transmissions of subscribers  Employers can monitor e-mail of employees  Some states have taken a “cat’s out of the bag” approach--confidentiality has already been compromised so there is no longer anything to protect

14. Confidentiality, Privacy and Security (4)  Do either patients or professionals understand they have little reasonable expectation of privacy? In fact e-mail and other online activity make it difficult (or impossible) to: –know when disclosure has occurred –to obtain patient’s consent Not only can communications be intercepted, mis-delivered messages are quite common.  Privacy and security are NOT the same The classic case is the sale of personal data by GeoCities; the information sold was very secure but privacy was not respected.

15. Confidentiality, Privacy and Security (5)  Any electronic communication may lead to TGI (transaction generated information or access markers) that can make tracking easy  Do consumers want third parties* to know they obtained information on specific problems or treatments vendors insurers employers, neighbors, etc.

16. Confidentiality, Privacy and Security (6)  Storage of records and notes in electronic format requires care Especially if on a network Especially if on a laptop  Use of passwords, encryption, and other methods such as removable media Remember the Basic Question: What is the standard of care that is expected?

17. Policy: Intellectual Property (1)  Some intellectual property issues may fade with new approaches to licensing & pricing  Consumers reject intrusive or cumbersome measures  Suppliers need to employ more effective pricing strategies

18. Policy: Intellectual Property (2)  Database protection laws create a new form of intellectual property in the EU and are being debated in the U.S. (There are ethical, legal, and economic aspects to this policy issue.) (Note: encryption policy is related to both intellectual property policy and privacy.)

19. ICD-9

20. CPT-4

21. Who Is an Authority?  The Internet appears to have a “leveling” effect Anyone can set himself up as a judge of others Many claims and criticisms may appear equally valid to untrained observers  These disputes can be especially difficult for patients and consumers who want results even if they may be problematical  Non-traditional medicine raises many difficulties (not just for the Internet)

22. Control of Information  The Internet may decrease the control traditional sources have over the flow of information. “Quackwatch” is a site that seeks to expose fraud and misinformation. The second example comes from the American Diabetes Association.

23. Exposing Quackery

24. Early Release of Information

25. Licensure (1)  The Internet makes it easy to “practice” across traditional political or licensing boundaries AMA reported 300% increase in “telehealth” consultations 1n 1997 most common category (20%) was mental health  The traditional provider-patient relationship will change (Licensure and liability are inter-related)

26. Licensure (2)  PL 105-33 requires Medicare Part B payments for telehealth professional consultations by 1 Jan. 1999  But it is sometimes difficult to distinguish between formal consultations and informal advice, especially when contact is remote  The examples that follow start with mental health and pharmaceuticals; we then look at an example that includes internal medicine specialties

27. An Attempt at Online Consultation

28. Liability (1)  General rules (which may be contentious) Providers should be licensed everywhere they provide service A harmed patient should have the right to sue where he is harmed

29. Liability (2)  Does professional competence include “technical competence” if new technologies are utilized to a substantial degree?  Who, if anyone, should be responsible for content in online forums and “chat rooms”? Computer Decency Act (Sec. 509) provisions required online services to take “reasonable measures” or be liable for defamation Should this apply to practitioners?

30. Do Disclaimers Work? (1)

31. Do Disclaimers Work? (2)

32. Summary  The Internet is a mature technology in an immature economy  Fundamental legal, economic, organizational issues are still to be solved  Critical choices should not be made prematurely  The Internet is already affecting the delivery of health and medical information and of services.