2. Engaging Citizens and Consumers in Setting Health Priorities Susan Dorr Goold MD, MHSA, MA Associate Professor of Internal Medicine Director, Bioethics Program

3. Acknowledgments Marion Danis, MD – Department of Clinical Bioethics, Warren Magnuson Clinical Center, National Institutes of Health Marion Danis, MD – Department of Clinical Bioethics, Warren Magnuson Clinical Center, National Institutes of Health Health Media Research Lab, UM Comprehensive Cancer Center Health Media Research Lab, UM Comprehensive Cancer Center Matt Davis, MD, and Jeannie Thrall, Pediatrics; Andrea Biddle, UNC; Ellen Benavides and John Klein, Cirdan, Minnesota; Marge Ginsburg, Sacramento Health Decisions; Nancy Baum; Stephanie Marion-Landais Matt Davis, MD, and Jeannie Thrall, Pediatrics; Andrea Biddle, UNC; Ellen Benavides and John Klein, Cirdan, Minnesota; Marge Ginsburg, Sacramento Health Decisions; Nancy Baum; Stephanie Marion-Landais Picker-Commonwealth Scholars Program, Robert Wood Johnson Foundation, Allina Foundation, California Healthcare Foundation, UM Biotechnology Development Fund Picker-Commonwealth Scholars Program, Robert Wood Johnson Foundation, Allina Foundation, California Healthcare Foundation, UM Biotechnology Development Fund

4. Disclosure As one of the inventors of CHAT, I, the University of Michigan, and the NIH benefit from royalties received from licensed uses of CHAT As one of the inventors of CHAT, I, the University of Michigan, and the NIH benefit from royalties received from licensed uses of CHAT

6. Public Frustration Purchasers search for ways to contain costs Purchasers search for ways to contain costs Patients and citizens have lost power and control over healthcare decisions Patients and citizens have lost power and control over healthcare decisions How do we make allocation decisions more patient-centered? How do we make allocation decisions more patient-centered?

7. The Problem Healthcare allocation decisions are politically, emotionally, intellectually and morally difficult Healthcare allocation decisions are politically, emotionally, intellectually and morally difficult

8. Consumer Sovereignty Model Choice Informed, prudent and imaginative consumers choose from several diverse alternative health insurance plans according to their own values and preferences Informed, prudent and imaginative consumers choose from several diverse alternative health insurance plans according to their own values and preferences Variations: Consumer cost-sharing, consumer-directed health benefit plans Variations: Consumer cost-sharing, consumer-directed health benefit plans Like market allocation of other resources, this system would fairly distribute goods according to individual differences in how they value various types and features of health insurance Like market allocation of other resources, this system would fairly distribute goods according to individual differences in how they value various types and features of health insurance

9. Citizen Involvement Voice Healthcare priority setting should reflect values and preferences of population Healthcare priority setting should reflect values and preferences of population Population affected by decisions should be involved in decision making Population affected by decisions should be involved in decision making Allocation decisions self-imposed, consent via participation Allocation decisions self-imposed, consent via participation

10. Obstacles for Both Models Issues lack salience for the well Issues lack salience for the well Consumers not well-informed Consumers not well-informed – Issues complex, technical, intimidating, frightening – Information needs are voluminous – Need imagination Purchaser is not consumer Purchaser is not consumer Accountability to purchasers Accountability to purchasers How involve citizenry - what method How involve citizenry - what method

11. CHAT Choosing Healthplans All Together© Simulation exercise Simulation exercise Participants design a hypothetical health benefits package, making trade-offs between competing needs for limited resources Participants design a hypothetical health benefits package, making trade-offs between competing needs for limited resources Group product  group deliberation Group product  group deliberation Overcome apathy, perceived irrelevance, and complexity, and moderate individual self-interest Overcome apathy, perceived irrelevance, and complexity, and moderate individual self-interest Goals Goals What health insurance features/benefits do citizens/consumers prefer? What health insurance features/benefits do citizens/consumers prefer? What reasons or values do citizens/consumers use to justify tradeoffs? What reasons or values do citizens/consumers use to justify tradeoffs? Can CHAT be a “just enough” process for setting healthcare priorities? Can CHAT be a “just enough” process for setting healthcare priorities?

12. Versions/Derivatives Board game (paper version) Board game (paper version) Software Software Group exercise - same time/place, laptops Group exercise - same time/place, laptops Content (financials, benefit options) can be altered using Planner software and Survey Editor Content (financials, benefit options) can be altered using Planner software and Survey Editor Automated data collection Automated data collection Web CHAT (2005) Web CHAT (2005)

13. The Exercise The Exercise Each round of play Each round of play Choose healthplan benefits Choose healthplan benefits Experience “health events” Experience “health events” Reflect out loud Reflect out loud 4 Rounds of play 4 Rounds of play Individual- choose benefits for self and family Individual- choose benefits for self and family Groups of 3-choose for “neighborhood” Groups of 3-choose for “neighborhood” Entire group-choose for community Entire group-choose for community Individual-choose for self and family Individual-choose for self and family

14. Choose Health Benefits CHAT board Wedge=Benefit category Layers=Levels (Basic, Medium, High) Number of holes = cost of benefits at that level Resources (50 pegs) 1 Peg=2% premium Player’s Manual Describes Benefit Categories and Levels (Basic, Medium, High) PHARMACY Pays for medicines your doctor prescribes BASIC (5) formulary, automatic generic substitution, $10 / $20 brand co-pay MEDIUM (7) Preauth for nonformulary Rx, $5 / $15 brand co-pay 8-HIGH-No formulary or preauth, $5 co-pay

17. ---Experience Health Events--- UNINSURED PEOPLE Health Events Players receive a “health event” through a “random” process SPECIALTY CARE VISION CARE

18. What we have learned What do they choose? What do they choose? Why do they choose the way they do? Why do they choose the way they do? What do they think of CHAT? What do they think of CHAT? >4000 have participated >4000 have participated low-income uninsured low-income uninsured employees employees senior citizens senior citizens adult disabled Medicaid enrollees adult disabled Medicaid enrollees Californians (basic benefits package) Californians (basic benefits package) youth and young adults in S. Africa youth and young adults in S. Africa

19. CHAT is enjoyable and understandable, even for those with little education 75%80%85%90%95%100% Informative Easy to Do Enjoyable Understandable

20. CategoryInitial - Individual - FinalGroups Hospitalization98.799.6100 Pharmacy93.196.1100 Dental96.193.0100 Tests81.188.1 91 Primary Care81.486.4 95 Specialty69.681.4100 Vision83.380.7 82 Mental Health59.065.2 95 Home Health58.464.2 86 Last Chance49.859.1 73 Other 56.756.2 73 Uninsured50.256.0 86 Long Term Care53.355.7 86 Complementary59.050.6 50 Infertility18.413.7 9 Low-Income Uninsured (n=234 in 22 groups) Danis M, Biddle AK, Goold SD. Insurance Benefit Preferences of the Low-Income Uninsured J Gen Int Med. 2002

21. CategoryInitial - Individual - FinalGroups Hospitalization99.6100100 Office Visits98.699.6100 Pharmacy98.299.3100 Prevention 94.094.3100 Dental92.893.6100 Other 77.383.7 97 Mental Health63.177.3100 Last Chance61.074.5 97 Uninsured53.966.0100 Long Term Care45.464.5100 Complementary58.558.2 59 Quality of Life36.233.3 28 Minnesota Health Reform Study (n=284 in 29 groups)

22. California Employees

23. Will Insured Citizens Give Up Benefits to Include the Uninsured? Initial Individual Final Individual Group No Coverage Children Only 4% premium Children and Adults (8% premium) Goold SD, Green SA, Biddle AK, Benavides E, Danis M. Will Insured Citizens Give Up Benefits to Include the Uninsured? J Gen Int Med 2004

24. (Almost) Everyone Prioritizes Preventive Services None6% None6% Basic63% Basic63% Medium27%94% Medium27%94% High4% High4% ALL groups chose preventive services of individuals Individual Choices for Prevention

25. If you had more money (markers), what one thing would you choose....

26. Choices of benefits changed Decreased intensity of coverage and increased breadth Decreased intensity of coverage and increased breadth Mean 9.3 categories  10.0 Mean 9.3 categories  10.0 Selected in Selected in Coverage area Round 1 Round 4 p † X-rays 91.8 %96.8 % <.001 Tests88.695.2 <.001 Rehabilitation46.468.6 <.001 Mental Health38.861.4 <.001 Last Chance38.659.9 <.001 Vision73.465.3 <.001 Quality of Life19.113.5.001 (N=698) † McNemar’s Chi-Square

27. Opinions changed Given the rising cost of health care today, it is reasonable to limit what is covered by health insurance 47% before 72% after McNemar’s X 2 p <.001

28. Participant ratings of Decision, Process and Information Decision Outcome Scale (2 items)4.1 +/- 0.9 (1 to 5) “I was satisfied by the group’s decision” Procedural fairness Scale (7 items) 4.3 +/- 0.9 “Disagreements in the group were resolved in a fair way” Information adequacy Scale (6 items) 4.2 +/- 0.8 “We had enough information to make good decisions” Mean +/- SD

29. Willingness to abide by the group’s decision North Carolina Minnesota California

30. Reasons and Rationales

31. Reasons Given for Covering the Uninsured It could (did) happen to me or someone I know “I have never had health insurance in my entire life. Nobody in my family (did).” [“But that’s your choice”] “But it’s not a choice, and I’ll tell you from personal experience that it’s not a choice.” “I was thinking not just of, not necessarily about myself but my sister who has 2 kids and it’s like well if she did lose her job... I would want them covered somehow.”

32. Take Care of the Children/Elderly “Do we want to at least cover the children of the uninsured?… I think even Jane agrees with that.” [Laughter] “When the mother or father of at least four children get sick, they don’t have access…so the kids are going to be left without parents.” “There are so many of the elderly who cannot afford any kind of insurance” “There are so many of the elderly who cannot afford any kind of insurance” “That’s a good point.” “Ok, I’ll go for it.”

33. Everyone Should Have Health Insurance “The bottom line is some people just can’t afford it, they can’t do it.” “…the single mom, and the kid. She’s working two jobs…and she doesn’t have a health plan.” “Right. I don’t have a problem with that.” “To me it’s a basic human right”

34. Better (or Cheaper) for Society “Your children are well taken care of … and healthy, not abused, not as addicted, we have less violence…my world would be safer.” “If we don’t insure these people they’re going to end up on welfare.” “They get [hospital] bills…and they can’t pay. Who pays for that bill?” “The hospital.” “No, we do. It’s the people who are insured.”

35. Reason Given Against Covering the Uninsured: It’s Their Responsibility or Choice “…that Joe Blow needs insurance, can’t afford it, they understand that. But to John Doe who doesn’t want to pay…and would rather buy the new car….” “If Theresa as a single parent decides to stay home and care for her children, when she’s very capable of working…” “Insurance is not an entitlement. It is not an entitlement. And if it is, then I should have life insurance and…long-term disability and short-term disability and everything else.”

36. People Will Drop Their Current Insurance “... everybody would drop their insurance” “How do we slow that uninsured group from becoming half the population?”

37. People Will Move Here to Get Insurance “And let’s talk about another reality. If we’re going to cover the adults, we are opening the door to people from states right now that have no coverage what so ever. And that will be a drain….Just like what’s happened with welfare.”

38. Preventive Services are not Controversial Preventive services choices not mentioned frequently in group discussions Preventive services choices not mentioned frequently in group discussions Perceived as valuable and cost-effective Perceived as valuable and cost-effective “I think prevention is real important because that’s where a lot of things begin and [you] catch everything …” “I think prevention is real important because that’s where a lot of things begin and [you] catch everything …” “[Prevention] is a low investment for a big return.” “[Prevention] is a low investment for a big return.”

39. Summary Groups of employees and ordinary citizens can and will deliberate effectively about health priorities Groups of employees and ordinary citizens can and will deliberate effectively about health priorities The CHAT exercise is viewed by participants as enjoyable, understandable, informative and fair The CHAT exercise is viewed by participants as enjoyable, understandable, informative and fair Most participants would be willing to abide by the decisions made by their groups Most participants would be willing to abide by the decisions made by their groups The exercise of prioritizing may make individuals The exercise of prioritizing may make individuals more understanding of the needs of others and necessary tradeoffs more understanding of the needs of others and necessary tradeoffs more prudent more prudent

40. Can CHAT be useful for the Community Meetings? What health care benefits and services should be provided? What health care benefits and services should be provided? How does the American public want health care delivered? How does the American public want health care delivered? How should health care coverage be financed? How should health care coverage be financed? What trade-offs are the American public willing to make in either benefits or financing to ensure access to affordable, high quality health care coverage and services? What trade-offs are the American public willing to make in either benefits or financing to ensure access to affordable, high quality health care coverage and services?