CAPITAL ACCOUNTS * D'IMPORTANCE CAPITALE
AIDS project spawns controversy, not results Charlotte Gray M
ention the TISAH project to those who have been involved in it and their voices audibly sag. The Treatment Information System for AIDS and HIV, announced in June 1990 by then Health Minister Perrin Beatty - it was a pivotal part of the national AIDS strategy designed by his department has gone badly wrong. Nearly $1 million has been spent, and so far there is little to show for it other than allegations of financial impropriety (since disproved), inadequate accountability, incompetence and, most recently, a cosmetic change. "It's a real mess," groans Dr. Philip Berger, cochair of the Toronto HIV Primary Care Physicians Group and one of the "stakeholders" charged in April with getting TISAH back on track. "The community of affected people and caregivers has lost faith in the whole thing.") Meanwhile, the need for more information on AIDS and HIV treatments blossoms. "It's an enormous problem for doctors to keep up with the scientific literature," says George Smith of Toronto-based AIDS Action Now. "How can they be expected to deal with patients who want the drugs they've heard about on the informal network among persons with AIDS, let alone the patients Charlotte Gray is a CMAJ contributing editor. 160
CAN MED ASSOC J 1991; 145 (2)
relying on Chinese medicine? mation would not deal with issues Most doctors, particularly outside such as "physician education, the urban centres, don't have a drug access, evaluation of experi-
clue." Ottawa gave the contract to develop TISAH, which was intended to be the centrepiece in Beatty's grand design for AIDS, to Dr. Kathryn Taylor of the University of Toronto's Department of Community Medicine and Epidemiology. It was an ambitious project, budgeted at $6 million over 6 years. By some definitions it was overambitious, since it included three different components: research, physician education and service delivery. TISAH was supposed to provide patients and physicians with current information on new treatments, complementary therapies and clinical trials. It would cover both traditional and nontraditional medicine and provide information in English and French. It would be the first system of its kind, a model for other countries to adopt. Information would be distributed through newsletters, a toll-free number and on-line computer hookups. From the start, TISAH met with scepticism. Beatty had not consulted physicians before announcing his national AIDS strategy. Writing in CMAJ last year, Berger argued that "for physicians, TISAH remains poorly defined and as yet undeveloped" (Can Med Assoc J 1990; 143: 309-311). He pointed out that a computer-generated flow of infor-
mental therapies, and medicolegal liability." However, when Taylor invited Berger to join the design committee, he agreed to "because
I know and respect her." The design committee also included representatives from the Canadian AIDS Society, Canadian Pharmaceutical Manufacturers Association, College of Family Physicians of Canada, Federal Centre for AIDS, Quebec primary care physicians, Canadian Public Health Association, CMA and AIDS Action Now. The last was included because it was the "user group" that lobbied for a national information exchange, and subsequently insisted that HIV-infected patients be represented on boards and committees. "It all got off to a very positive start," says Smith. "The design committee met about three times to give user input." There was discussion about the ways scientific information could be peer reviewed, and participants were impressed by Taylor's drive and vision. Then the problems began. "We lost the sense that things were going in the right direction," says Dr. David Walters, the CMA's director of health services and a member of the design committee. But the committee didn't hear what had gone wrong. Although members realized that the project team had missed the Nov. LE 15 JUILLET 1991
M--
15, 1990, deadline for a completed design, they didn't know that Taylor's handling of the finances and, in particular, her decision to hire her husband, a management consultant, were under scrutiny. In December the university quietly froze the project and brought in outside consultants to audit it. In February, to the horror of the design committee, a story about TISAH-related "financial irregularities" at the U of T broke in the Toronto Star. Taylor's name was quickly cleared after an internal audit, but she was removed from the project. Health and Welfare then had to reassume responsibility for a very shaky project, with Joel Finlay, acting director of the Federal Centre for AIDS, playing an interim management role and chairing the advisory committee. It was proposed that a separate "TISAH Inc." organization could function better than a university-based program. "We were given defacto managerial status," explains Smith. "But nobody had the spark to get this project going again, and the university's solution was simply to ask Ottawa for a further $1.8 million. The committee began to wonder if the university regarded TISAH as a free flow of government money." In April, the committee recommended that Ottawa cancel the contract with the university, and Beatty, now on his way to another department, concurred. A transitional team chaired by Finlay was appointed to assess what had been achieved and what could be transferred elsewhere. There are no heroes and many bitter feelings in this story. Walters questions the haste with which TISAH was awarded to one institution. "It was very political. Little preparatory work had been conducted to look at appropriate options, despite the size of the project, and no careful attempt was made to understand the needs in the medical community. My JULY 15,1l991
point has always been that there are existing structures and organizations with experience in developing and disseminating health information. Why do we need to spend so much money on a totally new and separate organization?" David Garmaise of the Canadian AIDS Society voices a common frustration with the University of Toronto's administration. "The university failed to deliver," he says.
he TISAH episode is just one instance, albeit an expensive one, of a common Ottawa phenomenon: good intentions and bad management.
"We felt the university had wasted almost $1 million," adds Smith. "We think at least half a million should be returned." Berger agrees. "In my opinion, there was a serious failure of management at the university's highest levels." Finlay, who works for the federal government, is uneasy discussing TISAH, given the project's bumpy history so far. Because the university's disentanglement from the project is still incomplete, he says, "the money issue will take time." But he insists that Ottawa "will not abandon TISAH - the department's commitment remains very firm. What we need now is a redefinition of its scope, and a prioritizing of what should go on-line." Mark Lippert, director of systems development at the University of Toronto and a member of the transitional committee, says
that the university will have no further involvement in TISAH. "But it's a very important project, and it's doable. I'm convinced it can be sensible." However, some observers are sceptical. As one told me, "Look, even with a million dollars this project didn't even start to get off the ground." The project, now referred to as the AIDS treatment information system, continues to limp along. "TISAH was the University of Toronto's project, so we don't use that name any longer," a departmental spokesman explained. As of yet, no one has surveyed physicians to see what their needs are or through what avenues quality-of-care issues affecting HIVinfected patients can be addressed. At a mid-June meeting in Ottawa, the federal health department and the project stakeholders decided that the department should develop the system's design over the summer, and in the fall plans for the project will be completed. By winter a new agency - possibly yet another university - will be selected to implement the plan. The TISAH episode is just one instance, albeit an expensive one, of a common Ottawa phenomenon: good intentions and bad management. But it also reflects a more insidious trend. The Mulroney government is reluctant to get into direct management of major national projects. Its reluctance is partly ideologic - the only good government is small government - and partly constitutional: Ottawa's mandate for health care, beyond observance of medicare's five principles, is fuzzy. However, without good analysis and careful guidance, initiatives like TISAH can easily go off the rails. Then Ottawa finds itself $1 million in the hole, and stuck with the job of getting the project back on track.m CAN MED ASSOC J 1991; 145 (2)
161
AIDS project spawns controversy, not results Charlotte Gray M
ention the TISAH project to those who have been involved in it and their voices audibly sag. The Treatment Information System for AIDS and HIV, announced in June 1990 by then Health Minister Perrin Beatty - it was a pivotal part of the national AIDS strategy designed by his department has gone badly wrong. Nearly $1 million has been spent, and so far there is little to show for it other than allegations of financial impropriety (since disproved), inadequate accountability, incompetence and, most recently, a cosmetic change. "It's a real mess," groans Dr. Philip Berger, cochair of the Toronto HIV Primary Care Physicians Group and one of the "stakeholders" charged in April with getting TISAH back on track. "The community of affected people and caregivers has lost faith in the whole thing.") Meanwhile, the need for more information on AIDS and HIV treatments blossoms. "It's an enormous problem for doctors to keep up with the scientific literature," says George Smith of Toronto-based AIDS Action Now. "How can they be expected to deal with patients who want the drugs they've heard about on the informal network among persons with AIDS, let alone the patients Charlotte Gray is a CMAJ contributing editor. 160
CAN MED ASSOC J 1991; 145 (2)
relying on Chinese medicine? mation would not deal with issues Most doctors, particularly outside such as "physician education, the urban centres, don't have a drug access, evaluation of experi-
clue." Ottawa gave the contract to develop TISAH, which was intended to be the centrepiece in Beatty's grand design for AIDS, to Dr. Kathryn Taylor of the University of Toronto's Department of Community Medicine and Epidemiology. It was an ambitious project, budgeted at $6 million over 6 years. By some definitions it was overambitious, since it included three different components: research, physician education and service delivery. TISAH was supposed to provide patients and physicians with current information on new treatments, complementary therapies and clinical trials. It would cover both traditional and nontraditional medicine and provide information in English and French. It would be the first system of its kind, a model for other countries to adopt. Information would be distributed through newsletters, a toll-free number and on-line computer hookups. From the start, TISAH met with scepticism. Beatty had not consulted physicians before announcing his national AIDS strategy. Writing in CMAJ last year, Berger argued that "for physicians, TISAH remains poorly defined and as yet undeveloped" (Can Med Assoc J 1990; 143: 309-311). He pointed out that a computer-generated flow of infor-
mental therapies, and medicolegal liability." However, when Taylor invited Berger to join the design committee, he agreed to "because
I know and respect her." The design committee also included representatives from the Canadian AIDS Society, Canadian Pharmaceutical Manufacturers Association, College of Family Physicians of Canada, Federal Centre for AIDS, Quebec primary care physicians, Canadian Public Health Association, CMA and AIDS Action Now. The last was included because it was the "user group" that lobbied for a national information exchange, and subsequently insisted that HIV-infected patients be represented on boards and committees. "It all got off to a very positive start," says Smith. "The design committee met about three times to give user input." There was discussion about the ways scientific information could be peer reviewed, and participants were impressed by Taylor's drive and vision. Then the problems began. "We lost the sense that things were going in the right direction," says Dr. David Walters, the CMA's director of health services and a member of the design committee. But the committee didn't hear what had gone wrong. Although members realized that the project team had missed the Nov. LE 15 JUILLET 1991
M--
15, 1990, deadline for a completed design, they didn't know that Taylor's handling of the finances and, in particular, her decision to hire her husband, a management consultant, were under scrutiny. In December the university quietly froze the project and brought in outside consultants to audit it. In February, to the horror of the design committee, a story about TISAH-related "financial irregularities" at the U of T broke in the Toronto Star. Taylor's name was quickly cleared after an internal audit, but she was removed from the project. Health and Welfare then had to reassume responsibility for a very shaky project, with Joel Finlay, acting director of the Federal Centre for AIDS, playing an interim management role and chairing the advisory committee. It was proposed that a separate "TISAH Inc." organization could function better than a university-based program. "We were given defacto managerial status," explains Smith. "But nobody had the spark to get this project going again, and the university's solution was simply to ask Ottawa for a further $1.8 million. The committee began to wonder if the university regarded TISAH as a free flow of government money." In April, the committee recommended that Ottawa cancel the contract with the university, and Beatty, now on his way to another department, concurred. A transitional team chaired by Finlay was appointed to assess what had been achieved and what could be transferred elsewhere. There are no heroes and many bitter feelings in this story. Walters questions the haste with which TISAH was awarded to one institution. "It was very political. Little preparatory work had been conducted to look at appropriate options, despite the size of the project, and no careful attempt was made to understand the needs in the medical community. My JULY 15,1l991
point has always been that there are existing structures and organizations with experience in developing and disseminating health information. Why do we need to spend so much money on a totally new and separate organization?" David Garmaise of the Canadian AIDS Society voices a common frustration with the University of Toronto's administration. "The university failed to deliver," he says.
he TISAH episode is just one instance, albeit an expensive one, of a common Ottawa phenomenon: good intentions and bad management.
"We felt the university had wasted almost $1 million," adds Smith. "We think at least half a million should be returned." Berger agrees. "In my opinion, there was a serious failure of management at the university's highest levels." Finlay, who works for the federal government, is uneasy discussing TISAH, given the project's bumpy history so far. Because the university's disentanglement from the project is still incomplete, he says, "the money issue will take time." But he insists that Ottawa "will not abandon TISAH - the department's commitment remains very firm. What we need now is a redefinition of its scope, and a prioritizing of what should go on-line." Mark Lippert, director of systems development at the University of Toronto and a member of the transitional committee, says
that the university will have no further involvement in TISAH. "But it's a very important project, and it's doable. I'm convinced it can be sensible." However, some observers are sceptical. As one told me, "Look, even with a million dollars this project didn't even start to get off the ground." The project, now referred to as the AIDS treatment information system, continues to limp along. "TISAH was the University of Toronto's project, so we don't use that name any longer," a departmental spokesman explained. As of yet, no one has surveyed physicians to see what their needs are or through what avenues quality-of-care issues affecting HIVinfected patients can be addressed. At a mid-June meeting in Ottawa, the federal health department and the project stakeholders decided that the department should develop the system's design over the summer, and in the fall plans for the project will be completed. By winter a new agency - possibly yet another university - will be selected to implement the plan. The TISAH episode is just one instance, albeit an expensive one, of a common Ottawa phenomenon: good intentions and bad management. But it also reflects a more insidious trend. The Mulroney government is reluctant to get into direct management of major national projects. Its reluctance is partly ideologic - the only good government is small government - and partly constitutional: Ottawa's mandate for health care, beyond observance of medicare's five principles, is fuzzy. However, without good analysis and careful guidance, initiatives like TISAH can easily go off the rails. Then Ottawa finds itself $1 million in the hole, and stuck with the job of getting the project back on track.m CAN MED ASSOC J 1991; 145 (2)
161
