Privacy Legislation and the Right to Know: A Manitoba Couple Helps the Province Clean Up its Act, Part II
A year after the death of her mother Frances, Mimi and Blake found that many of their questions were left unanswered and their concerns about the pitfalls of Manitoba’s Personal Health Information Act (PHIA) dismissed. They soon realized that a twofold approach would be needed to achieve their goals of finding answers and improving the current legislation.
A Twofold Approach
Mimi and Blake followed the formal complaint processes required by various government agencies and the regulatory bodies involved in health care. This included communications with the hospital, the health region, Manitoba Health, Manitoba Justice, the provincial Ombudsman and the College of Physicians and Surgeons of Manitoba. At the same time they focused on sharing their concerns about PHIA by communicating with people in the community.
“We thought about who would be interested in this type of issue,” says Mimi. “Seniors are most often vulnerable when in hospital and are most representative of patients in the hospital.” At first, deciding to join the Issues Committee of the Manitoba Society of Seniors (MSOS) proved to be a real turning point for their efforts. Committee Chair and long-time patient safety advocate Chuck Cruden helped them spread the word about PHIA. In addition to featuring a number of articles in the society’s journal, he also helped them develop a questionnaire for its readers. People started responding. Unfortunately, a change in leadership at the MSOS also meant a change in their support for improvements to the PHIA legislation. Mimi felt that support for any issues challenging provincial government policy or legislation seemed to quickly disappear under the new leadership.
Mimi and Blake tried to engage local television and print media by speaking to them at every opportunity. They gave presentations at the public hearings during the provincial review of the legislation in 2004. Their efforts received more attention the following year after they approached local politician and medical doctor Jon Gerrard who subsequently raised the issue in the provincial legislature.
When the results of the provincial review of PHIA were finally released in 2006 they found that none of their recommendations had been included. That same year they became members of the Patient Safety Advisory Council of the Winnipeg Regional Health Authority. Within a few months the council approved their recommendations for changes to the health region’s access to information policy. Less than a year later the council was disbanded and the policy changes abandoned. Mimi and Blake refused to give up and kept speaking out about the need for changes to the Act.
In 2007 they supported Jon Gerrard’s Private Member’s Bill calling for improved access to personal health care information within a 24-hour time frame for patients in hospitals and personal care homes. The bill did not pass but the issue caught the attention of the Minister of Health, Theresa Oswald. Then in May 2008 the Health Minister announced that the province was proposing amendments to improve PHIA. They met with her to discuss the proposed amendments. They also gave presentations to the legislative committee highlighting the importance of a 24-hour time frame for access to information and the requirement to inform patients about their access rights.
The Manitoba government passed Bill 32 The Personal Health Information Amendment Act in 2008 but did not proclaim it into law. During this time, Mimi and Blake worked with government agencies on developing promotional materials to help inform the public about the new Act. They are pleased to see that the new PHIA posters which they created with Manitoba Health are now posted prominently at major health care facilities in the province; a regulation that they insisted accompany the new legislation. However, there is still work to be done by government to ensure that the public at large is aware of the new access to health information rights.
Improvements to Manitoba’s Personal Health Information Act
The Personal Health Information Amendment Act came into effect on May 1, 2010 in Manitoba. The new legislation offers three key improvements:
Mimi and Blake feel the legislation is good news for patients and their families and a fitting tribute to her mother. “Intelligent, kind and generous as well as unafraid to speak up when necessary, I’m sure my mother would be proud of what we were able to accomplish for Manitoba patients,” she says.
It’s important to familiarize yourself with provincial privacy legislation and your rights to access personal health information. “Formally authorize a family member or close friend to have ongoing access to your health care records ahead of time so that when you are admitted to hospital or a personal care home this document will already be in place,” advises Mimi. Looking back over their eight year endeavor she says that she wouldn’t spend so much time and effort appealing to the regulatory bodies “If you or your loved one has had an unacceptable experience in a health care facility that has not been addressed by the authorities, do not be afraid to speak out about it – it is our only hope of getting our health care system changed for the better.”