Tag Archives: patient

You decide. No YOU decide.

Posted by on October 30, 2010 No comments

I believe it is commonly acknowledged that people sought health care information in droves on when the Internet once widely available to the general public. There are many studies (e.g. Pew, also Stats Can) demonstrating the increased percentages. This issue no longer requires documentation. I also think that when people did not find the health-related content they wanted they began to create it on their own. They did this by sharing their stories and providing anecdotal information. Web 2.0 applications helped facilitate this process. The fact that this behavior has not only continued but grown demonstrates there is value in this information.

As a result of this I make some assumptions in my research. I believe that some people want to learn about their condition. Others are seeking information in order to maintain health or prevent illness. I also believe people are using the Internet to find information that will improve their capacity to engage in shared decision making with health providers.

For many of those in need of information the Internet has been a valuable tool. Many want to know everything they can about their illness, they may “throw themselves into it” by reading, joining support groups and becoming actively involved in a community of people with the same condition (of course there are the blunters as well!). Then they seek information that is only of use for their current circumstances. They may begin to pull back from their involvement and many may remove themselves entirely from participation. This is a trajectory that many patients follow.

There are other viewpoints about providing access to health information. It has its side effects, both good and bad. Some believe that information provision creates a mechanism to download more responsibility of health care to the individual. Patients may feel pressure to make changes in their behavior not necessarily because they want to but because they feel bombarded with messages stating that they should. This “blessing” of information can become a burden. Increased advances in medical research that have been translated into health promotion (for example, the use dental floss, drinking more water, exercise 3 times per week for an hour, eat three balanced meals per day including at least two items from each of the four food groups and so on). This can be annoying – when will I have time to enjoy the long and healthy life I’ve supposedly just created for myself when I must spend so much of my free time sustaining it? We must be aware of “patient burden”; the shifting responsibilities of care onto the individual and the community, which may alleviate this accountability away from health professionals and the institutions in who are ordinarily responsible. The intention of providing and sharing information is meant to provide options not obligations.

However, access to information can also facilitate a shift in power – patients are becoming more knowledgeable about their health, asking questions and challenging their health care providers. In the end decisions about behavior are up the individual. This change is happening across all sectors (e.g. education – your child needs extra help at school, you must hire a tutor) as the welfare state created in the 1950s, which flourished in the 1970’s under Trudeau’s social justice policy framework becomes too expensive to maintain. We may all be alone in this universe but no one of us is an island. Our individual behaviour affects the collective population.

Patient Advocacy: re-visiting strategies from the AIDS movement

Posted by on August 1, 2010 2 comments

Some things never change.

The first International AIDS conference was held in Atlanta, Georgia in 1985. It was next held in the US (San Francisco) in 1990. Shortly thereafter the US closed its borders to persons with HIV. There has never been an International AIDS conference held there since. Not only did this add burden to other less wealthy countries to act as host it also made it tricky for travelers in which unforeseen layovers required landing on US soil (for example, the International AIDS conferences in Vancouver in 1996 and in Toronto in 2006) . Obama has recently lifted this ban. It only took twenty years. Not sure where the US AIDS movement stood on this issue – perhaps they were overwhelmed with advocating for research funding, access to medications, affordable housing and other fundamental issues that many people living with HIV struggle with on a daily basis. Some of their extraordinary work on these latter issues has been documented in Randy Shilts excellent book, “And the band played on“.

Here in Canada we didn’t shy away from vocal outcries of injustice, particular in relation to access to affordable medications during the Vancouver conference (1996) but things seemed to be more tame when held in Toronto in 2006. The end of the International AIDS conference this past month in Vienna, Austria has brought attention back to Canadian HIV/AIDS activists efforts.

This recent CBC article has reminded me of the “good old days”.

One of the most important shifts in the AIDS movement was the legitimacy and status of those infected. How many remember the Four H club: homosexual, hemophiliac, Haitian and heroin user? The shift away from this stigmatizing labeling was a slow process. A handful of people publicly disclosing their status, many (e.g. Ryan White, Rock Hudson, Elizabeth Glaser) because they were forced to so. No doubt this helped bring a face to the disease. But there was still much stigma, especially centred around transmission. Camps between those who “got it the right way” (e.g. by transfusion) separated themselves from others who engaged in behaviour considered deserving of certain death. It was a great time for the “holier than thou” crowd.

Here in Toronto, a city with a large population of persons infected with HIV a number of key events occurred that helped “turn the tide”. On the treatment side the use of steroids as an adjunctive treatment for PCP was a substantial discovery by a team at Toronto Western Hospital. This discovery was published in 1987 in “The Lancet”.

On the advocacy side we began to made great strides when local physicians disclosed their HIV positive status, some changing their medical specialities in order to reduce patients’ at risk for infection during procedures and others changing their practice to focus entirely on the care of persons with HIV. Many of these were gifted speakers and were able to articulately argue and advocate for persons with HIV, including themselves. More power, more legitimacy, more voice.

Others, such as Phil Berger, had the crisis literally fall in their lap when large percentages of their practice constituted people infected with HIV. Phil advocated hard and fast on behalf of his patients. He attended the first International AIDS conference and continues to be a voice in the movement. He is probably first physician I knew who was truly provided patient-centred care. In 1985.

And no one could argue that Stephen Lewis and his work in HIV in developing nations has been nothing short of extraordinary.

But perhaps the most significant change came about by two (seemingly ordinary women), both from Toronto, both lawyers and both HIV positive. Not a single member of the four H club. Louise Binder, a leader in drug-policy reform almost single-handedly forced the Health Protection Branch at Health Canada to change their policies around drug trials. Maggie Atkinson also worked on treatment advocacy as well as inclusion of persons with HIV in research.

The most significant advocacy movement occurred during the 1996 Canadian federal election. The National AIDS strategy expired that year and there was no firm commitment to renew it. Maggie and Lousie attended an elite, invitation only Chretien (then federal Liberal party leader) fundraiser in Toronto where they mingled politely with other “friends” of the Liberal Party, most of whom were undoubtly unaware of their intentions. As soon as Chretian took the floor to speak Louise disrupted him with a cry from the floor demanding the AIDS strategy be renewed. Both her and Maggie were immediately escorted out. However, the funding was renewed the next day.

Louise also worked tirelessly to help provide access for children to the HIV drug Tenofovir. Part of her strategy involved a press conference bringing the issue to the public’s attention. Her efforts were successful and the drug was made available. For this she and her other work in HIV Louise was awarded the Order of Ontario.

I look forward to seeing my colleagues in the patient advocacy movement with similar distinctions in the coming years.

For those of us in this movement things have also moved slowly. We’re attempting to call attention to the wide spread (yet disjointed) problems with the health care system. We have a few disadvantages. Our issue has not a front page story every day for years. Our issue does not involve the fear of catching a deadly virus. But our one advantage is that everyone of us is a patient and is only one encounter from a bad, possibly catastrophic experience. The Internet is full of these stories. It will take time for us to see ourselves in other people’s health care stories. Many of us could not relate to the Four H club. At first.

We will also need to collaborate in ways we never dreamed possible.