In less than 100 words, what is your idea?:
This is an idea for an online resource and/or tracking system for consumer reporting of adverse psychiatric drug reactions. The Therapeutic Goods Administration (TGA) already has a system in place for reporting adverse drug reactions for all medications and vaccines however there is no public disclosure of the process of investigation nor its outcomes (see http://www.tga.gov.au/adr/rephap.htm). This idea could give people online information about all adverse reactions to particular medications recorded by the TGA and what actions have been taken. If the TGA was not involved, reports could be logged on the site by consumers instead (or a combination of both). There could be links to all publicly recorded information about known adverse reactions such as drug trials conducted by pharmaceutical companies - how long the trials went for, how many participants, where the data was published (if at all), when the drug was approved, and adverse side effects already noted. The website would be limited in scope to psychiatric medications used by Australian consumers. The site could also include discussion forums and resources for mental health consumers on medication use, peer support, consumer advocacy, recovery, and local networks and support groups.
What is the social need or challenge your idea could address?:
Many psychiatric medications are known to cause symptoms of mental illness such as anxiety, suicidal thoughts, psychosis, and paranoia (along with other neurological and physical injuries and even death). Consumer reports of adverse psychiatric drug reactions are often under-reported to the TGA, and existing logs of adverse reactions attributed to particular drugs are not easily accessible to the public. In addition, mental health clinicians can face difficulties in identifying adverse psychiatric drug reactions and may wrongly attribute the reaction to the client's mental health issues due to lack of training in this area. In this situation, a client experiencing an adverse drug reaction may be prescribed additional medication inappropriately, further worsening their condition. The lack of public disclosure and under-reporting of adverse psychiatric medication reactions contributes to a general lack of awareness on the part of both consumers and clinicians. This lack of awareness can result in longer-term drug-induced injuries sustained by clients of the mental health system.
What’s really new about your idea?:
There is no existing public forum or information service in Australia which provides for the public disclosure of adverse psychiatric drug reactions experienced by people with mental health issues. Many mental health clients thus suffer adverse drug reactions in silence and never receive adequate treatment for their condition. This website would provide an information service about adverse psychiatric drug reactions, allow people to share their experiences, develop peer support relationships, and build networks towards greater public disclosure of adverse psychiatric drug reactions.
Comments
Re: Adverse Psychiatric Drug Reactions
I am concerned at the negativity of this idea - there is a built in bias towards things going wrong. Many people could not function without their medication and this lacks objectivity. Good and adverse reactions and the comparative frequency of each would be much more valuable information.
Re: Adverse Psychiatric Drug Reactions
Hi Penny,
Yes it is a bit negative I agree! I was kind of thinking out loud when I first put in the idea, but I guess that's the best part of the SI Camp model that other people can come up with improvements or even take the idea in a different direction. Appreciate your input - a lot of people do report benefits from medications so how their input would be included if at all is a good question.
Re: Adverse Psychiatric Drug Reactions
I guess there could be some degree of anonymity on how the users present themselves on the site?. The only downside to that is that you would like people to be as open and transparent as possible to ensure they are not making up stories. Maybe this could be covered by a disclaimer?. Do you have any ideas on how to approach that?
Re: Adverse Psychiatric Drug Reactions
I have seen the success of Curezone (www.curezone.com) which has grown considerably over the years and think there is definitely a place on the internet for these kinds of discussions - that necessarily occur outside of formal institutions.
In terms of people making up stories, sure that would be an issue with any non-formal discussion board. Many people already use Curezone to report adverse drug effects, as well as positive effects. Just check out their range of forums. I think they have a great model that is totally grassroots.
I think people's social media literacy level is also increasing in terms of the ability to detect 'plants,' advertising disguised as posts, or overt product placement in discussion forums. But, it probably depends on the online communities involved I guess. It seems the less control you place over an online community and contributions, the more interaction you get.
Re: Adverse Psychiatric Drug Reactions
As you say, open and transparent are best served by people using their real identities. Though, there are certainly some uses for pseudo-anonymity.
There are technical things that can be done, like the use of "handles" or "nicknames" that can obscure the name of the person writing. This may be suitable for hiding personal identifiers. Though, if litigation came into it, the name would have to be revealed to the litigant.
One needs to think through exactly what needs you are trying to meet by having such a system. This might be best achieved at a round table with the right people (continuing online, we could discuss this ad infinitum without clear resolution). Definitely need one or more medical person providing input from the sector.
Re: Adverse Psychiatric Drug Reactions
I understand that such a resource would be useful to the community, and to the individual in assessing the quality, and understanding the risks of taking particular psychiatric drugs. It seems obvious, but I just want to be clear, that the reason this idea is limited to (1) psychiatric drugs, (2) australia, and (3) adverse reactions, is that it's trying to limit the scope of the site. So, that it doesn't become so large that you can't find anything?
Anyway, I understand that a site that's independent of the regulatory body, and pharmaceutical bodies, and medical trade associations could be ideal for reporting these things. I do wonder who would contribute to the site. If, for example, you had an adverse reaction that was bad enough that you would sue the pharma company, then your evidence would be required to get a settlement, and I would think that the drug company might make it a condition of payment that you would delete (or deny) everything mentioned on public forums. The non-disclosure that happens in the situations that you've mentioned would still be present, disclosure would likely reduce the settlement amount available to the litigant.
On a different note, I suspect that there may be legal issues, like libel and defamation from the things that people might write on the board/forum.
If the forum is more support oriented, rather than symptom oriented, then it might be ok, and it might get sponsorship from various support groups (eg, mental health council of australia - mhca.org.au, multicultural mental health australia - mmha.org.au) that want to help the people who use the board. These groups probably don't want to antagonise big pharma or any of the psychological help groups...
I know the above seems rather negative and unsupportive, but I actually think the idea can be refined and a resource can be created that will be useful. But it needs some development to clarify who it's going to help, and who is going to contribute and support it.
Re: Adverse Psychiatric Drug Reactions
Glad to see there's so much feedback about this idea... I'm not sure myself how the system could work best - the main theme was to give consumers a voice outside of the formal institutions in mental health.
I read a great article in a nursing journal once by a mental health consumer advocate who posed the question, in what other area of health care do patients identify themselves as "survivors" of the service (ie: "psychiatric survivors").
People who never venture into psychiatric wards, especially public wards are usually unaware of the reality of power dynamics between mental health consumers and clinicians. Due to the particular paradigm of psychiatry, once you're diagnosed, your every expression is potentially viewed as a symptom of your condition - including drug adverse effects or distress from them.
Add to that the broader sociopolitical environment within which psychiatry is situated. If you've ever seen any documentaries about people that have tried to actually sue pharmaceutical companies for adverse drug effects you'll understand that it's no mean feat. You've pretty much got to be prepared to put whatever is left of your mental health on the line, and if cases are settled out of court, there is no public disclosure of adverse effects to benefit the health and wellbeing of other consumers.
Social media offers a way for "consumers" (ie: citizens) to get some control back over the debate - a debate so far heavily controlled and influenced by very powerful players. Curezone is a great example (as well as social media generally) of how people are able to have their own discussions about their health and self-educate. Another great example of the use of social media to voice dissent is the Humantics Foundation: http://www.humanticsfoundation.com/ If you follow the debates and lawsuits involving Quackwatch with this particular case you'll get some idea about the heavy duty interests involved in controlling public information about health. Look at the example of women that tried to sue Dow Corning for health problems from breast implants. It's a long, hard road when individuals take on multinational companies which are bigger than entire national economies.