Health voices co-opted
By Alan Cassels, December 2015
The Ministry of Health’s attempt to privatize the voice of patients does not have a promising prognosis.
Private corporations vying to position themselves to suck as much as possible from healthcare budgets occasionally deliver some shocking truths. Greg Reh, the US and Global Life Sciences Leader at Deloitte Consulting LLP, wrote an online commentary last month, “Capitalizing on the latest breakthrough drug: the patient.” He writes that “life science” (i.e. pharmaceutical) companies “should consider revisiting the strategies and services they provide around patient access, support, education, and adherence. If they don’t, they could lose out on one of the best breakthrough drugs of the century—patient engagement.”
Which is to say, Deloitte’s the kind of big league multinational consulting firm capable of packaging up a nice little pill for governments and drug companies to swallow: the voice of the patient.
The reason people in BC should care about what a multinational consulting firm thinks about “patient engagement” came to a head in late September when the BC Ministry of Health awarded Deloitte LLP a $6.9 million, three-year contract in response to a request for proposals to manage the Patient Voices Network. ImpactBC, a private not-for-profit group had held the ministry contract and oversaw the activities of this group of 740 volunteers across BC for six years. Those patient voices were frequently deployed to various health authorities, physician and research groups, and others who were trying to ensure that any changes to how we deliver health care are done on the basis of independent—and genuine—patient input.
On September 23, when the Patient Voices volunteers heard that the running of their network had been outsourced to a for-profit company, upheaval ensued. Letters were written. Most volunteers threatened to quit. Politicians were lobbied. Muck was raked (including the exposure of details of some of Deloitte’s direct-award contracts from the BC government, their connection to a BC cabinet minister’s husband, and their donations to the Liberal Party of BC). After an October that rang with bitterly expressed outrage and political pressure, Minister of Health Terry Lake relented. In early November he wrote a letter to NDP health critic Judy Darcy saying, “We have decided to cancel the [request for proposals] and bring the program into the Ministry.”
A story with a happy ending? Not quite. Certainly not for people like Diane Miller, the CEO of ImpactBC who was in her office in Vancouver packing up boxes when I called her to ask what this upheaval has been like. She has had to lay off most of her staff and is now in the process of dissolving what, from outside accounts, has been seen as a model agency for involving patients in healthcare.
It seems the problem might have started several years earlier when someone complained that ImpactBC was getting its annual contract renewed without competition. The fact that ImpactBC was not-for-profit and was delivering a unique service for year-by-year contracts wasn’t enough to defend it from the hawks of competition.
After a long delay last year when ImpactBC’s contract award was challenged, the group went for five months without funding. This shot across the bow produced a delicious carrot for private companies: a Request for Proposals process with a three-year contract reward to the winner. With barely a month to respond, it seems like ImpactBC couldn’t compete with the high-powered consultants at Deloitte. This came out of the blue for Miller because no one within the Ministry had voiced any concerns about Impact BC’s ability to recruit and support patients in its many requests for patient engagement.
She admitted to being “disappointed and shocked” that the Ministry would close down an organization that had built up both the expertise and a track record of providing patient voices to health system changes, not to mention the six years of goodwill that the Ministry had been able to foster through their extensive network of recruited patient volunteers. “It’s a travesty—I really strongly believe in involving the patient voice and they’ve lost something very, very valuable. By cancelling this contract,” she said, “they’ve really restricted their ability to deliver on the promise of patient and family-centred policy.”
With a staff of about 18 and a budget of a bit over $2 million per year, ImpactBC operated at arms-length from the Ministry, in a manner that is noticeably distinct from the kind of “patient input” you often see with other patient groups. For example, many disease groups and patient advocacy organizations, such as the BC Better Pharmacare Coalition, are almost entirely funded by the pharmaceutical industry and speak in a voice that ensures it’s the funders and not the patients whose voices are most vocal.
Miller explained that one of the main jobs of ImpactBC was finding the right kind of volunteer for the right job, employing their patient representatives in a variety of ways, and supporting both the volunteers and their healthcare partners so that the engagement was meaningful for both.
For example, for a health authority trying to redesign a surgical process, there wouldn’t be just health professionals around the table trying to figure out what’s best for the patient. “We would invite a few volunteers to be part of the whole redesign process,” she said, explaining that when real patients got involved, they saw things no one else saw and changes were made that reflected that patient-centred approach.
Johanna Trimble has been a volunteer in Vancouver with the Patient Voices Network for six years. She became a strong consumer voice on the overprescription of drugs to seniors when her own mother-in-law experienced several near-death experiences from too many drugs in a long-term care facility. She now channels her energies and knowledge of the “overdrugged elderly” as a “Champion” in Patients for Patient Safety. She is also is an honorary lecturer at UBC’s Department of Family Practice where she teaches medical students that listening to the voices of elderly patients and their caregivers about the drugs being prescribed is a healthy thing.
Trimble said the volunteer work is part of the way that people like her make meaning of the experiences in their lives. “Most people get into this because something bad happened to them. After you go through your process of grief, anger, revenge, etc, you want to make sure it doesn’t happen to anyone else. You have to go back into the system hoping you can trust them. We go back hoping we can make a difference.”
For the Ministry to callously and unceremoniously dump ImpactBC, and hand over the 740-member Patient Voices Network to a private company that consults to the pharmaceutical industry is an added insult to her injury. “Now we feel like we’ve been betrayed twice,” she said, describing the Ministry’s action as “selling Patient Voices to the lowest bidder. It’s the corporatization of the patient voice.”
Health Ministry spokesperson Laura Heinze emailed me written responses to several questions. She wrote: “The RFP, after review, showed the need for a different and closer relationship between the volunteer network, the ministry, and the health authorities—to ensure patients have a strong voice to support our strategic agenda over the next couple of years.” She continued, “At this time, it was decided that the best approach is to bring the program into the Ministry.”
I asked Trimble, one of the longest-standing members of the Patient Voices Network, what she thought of this. Trimble was unequivocal: “We don’t support anyone’s strategic agenda,” she said, adding, “This is asking for a patient voice that will support the Ministry of Health, not one that speaks only for the patient.”
That perspective was echoed by Diane Miller when I asked her what it would look like for the Ministry to manage the work in-house. “Are they volunteers for the Ministry? Then they will feel co-opted and they can’t give their honest opinion.”
At the end of the day, ImpactBC is closing its doors, but the Ministry people who have engineered the decision to outsource—and then in-source—the management of patient input are still there.
For Trimble, these actions all come down to trust. “To keep the trust we have earned with our partners working within the healthcare system we must be, and be seen to be, an independent voice,” she said. It is something that she thinks will be jeopardized when the Ministry starts taking over, and perhaps starts to command the patient voice. She has suggested that the BC Patient Safety and Quality Council take over.
In an email, she quoted the American writer Joe Bageant who wrote in his 2007 book Deer Hunting with Jesus: “Outsiders bring something else with them. They bring themselves as models of empowerment. And if they are good at what they do, they bring backbone.”
Undoubtedly the Minister of Health showed backbone when he cancelled the Deloitte contract after hearing the patients’ voices loud and clear, correcting a mistake instead of justifying it. But let’s give Johanna Trimble the last word: “Now we need that backbone to support us to continue to do this important work as a voice that is truly independent from both industry and the Ministry.”
Alan Cassels is a pharmaceutical policy researcher in Victoria and author of the just launched book, The Cochrane Collaboration: Medicine’s Best Kept Secret.