Hi all,

So CPSI is offering a two-day course this fall in Toronto for patients to learn about patient safety, called "Become a Patient and Family Leader Patient Safety Trainer". It costs $899 per person plus HST plus hotel and travel. They apparently expect you have a healthcare organization as a sponsor.

Now hear this --- there's an alternative to go deeper on your own. You can follow an information rich self-teaching patient safety course online. For free. Maybe a steep learning curve, but you can take your time. You can download the content for off line work. You won't earn any formal credit but you will certainly learn. And this door may possibly close, because it seems too good to be true.

The Canadian Paitent Safety Institute has its PSEP course curriculum posted here that also includes webinars. That's Patient Safety Education Program (TM), first developed in 2011 and then revised in 2015 aimed at health care professionals.

The slide decks are posted and downloadable with written notes to narrate each slide. There are oodles of references to drill deeper. I've just taken a quick look, and there are some missing module links. You might find that there are other holes in the flow or in individual modules. But I would say, this is excellent traditional patient safety content. You should be able to make your own and use.

Just dipping in will be adequate, if all you want is to comprehend vocabulary and the most general concepts. That will enable you to contribute substantially more effectively than many practitioners and most patient advisors who haven't been exposed to this foundation. And you will feel more confident, I feel sure. Bear in mind that perspectives on improving patient safety are evolving. But to talk to today's practitioners, this is the stuff.

Give it a quick investigation and see what you think. Am I right?

Of course, I'd love to see you dive into this on your own. So is this within our individual capacity? Might this be interesting enough to warrant a PAN discussion topic for those who'd like to work their way through with others to share questions and ideas? I suppose we could form a subgroup within this group site to benefit collectively as a patient safety interest group. Let me know!

Please offer your responses here, and let's see where this might go. Or not go. Or go later. Thanks for your time reading and investigating.

Cheers,
Carolyn

The potential power of plain language November 22, 2017

by Mychal Voorhees @Girl_Mychal #HealthLitOnTech

http://bit.ly/2BnrJCC

"Plain language"
BlogIt's a phrase that's often tossed around. But how often do we use it when we should? Plain language is communication your reader can understand immediately. It requires that readers be able to find what they need, understand what they find, and then use that information for their own benefit. It's not enough for them to understand one sentence of text; it must all work together.

When we think about plain language, we often think about writing for websites, patient education materials, and forms. We spend hours on editing text to meet plain language guidelines and ensure our messages are clear. One area where I lack focus on using plain language is social media.

We use social media on a regular basis to promote our work, share information, and engage our audiences. In 2016, 79% of adults who are online reported using Facebook1, and that is just one of many social media platforms. And it's not just digital natives and millennials who use social media. In 2015, 35% of adults 65 and older reported using social media, compared to only 2% in 20052. In a recent study, patients who self-reported having low health literacy were more likely to use social networking sites for health information than those with high self-report health literacy. This is a critical audience to reach with social media messaging, so how can you maximize your use of plain language to expand your message's reach?

Keep it short and simple.

As plain language guidelines advise, keep your messaging and wording short and simple. This is a win-win in social media where we're often limited to character counts and shorter messaging is more effective.

Speak to your audience and speak like

This is a great opportunity to do away with the professional writing and speak conversationally. When you post on social media, ask yourself, is this how I'd talk to a friend while we're out to dinner? Use common words. Address your audience directly with pronouns. Use humor and tell stories.

Avoid abbreviations and acronyms.

You may be trying to keep on top of the newest slang and acronyms on social media, but this doesn't pass as plain language. We alienate groups when we start to use acronyms and abbreviations without explanation. I suggest sticking to words people will be familiar with. ‘IMO' is short, but ‘in my opinion' is clear.

Make it actionable.

Plain language guidelines require that people know how to use the information, and this rule lends itself especially well to social media. You should use social media with a clear purpose, so tell your audience what it is. Do you want them to share or retweet? Do you want them to take action like have a discussion with their doctor? Tell them explicitly what they should do.

Call for backup.

If you're stuck on how to simplify your message, there are plenty of free resources that can help. A few that I recommend include: University of Michigan's Plain Language Medical Dictionary, The Plain Language Action and Information Network's Guidelines, and the CDC's Guide to Writing for Social Media. If you're writing something longer like a blog post, you might want to use the Hemingway Editor. Just copy and paste your text into the editor and it will suggest ways you can simplify.

Those of us in health communication spend a lot of time thinking about ways to make our message simple. I'm certain we can be more deliberate about creating social media content that is clear, understandable, and actionable. What other tips do you follow when posting to social media?

Sources:

1 Greenwood, S. Perrin, A., & Duggan, M. (2016). Social media update 2016.
http://www.pewinternet.org/2016/11/11/social-media-update-2016/

2 Perrin, A. (2015). Social media usage: 2005-2015.
http://www.pewinternet.org/2015/10/08/social-networking-usage-2005-2015/

3Manganello, J., Gerstner, G., Pergolino, K., Graham, Y., Falisi, A., & Strogatz, D. (2017) The relationship of health literacy with use of digital technology for health information: implications for public health practice. Journal of Public Health Management and Practice, 23, 380-387.

Blog author photo

As a proud member of Clinical Trial Ontario's Patient & Public Advisory Group, I'm looking forward to this information packed two day conference. I hope you register & join in virtually!

Hi Dharshika

I don't know any details of the offer, but I have been getting email about the conference from this person:

Marta Rocha

Engagement Manager

National Forum on Patient Experience (Sept. 24-25, Toronto)

Strategy Institute

Toronto | New York | London
416-944-9200 Ext.228

1-866-298-9343 Ext.228
marta@strategyinstitute.com

website: https://www.patientexperiencesummit.com/

Maybe she can help you to get registered, or direct you to the right person.

Hi Amy

Do you know if they will record this presentation? I will be returning from Winnipeg that day.

Virginia

Michelle Mika 8:00 AM

a) they need a speaker

For the hackathon itself, it would be great to have 1 speaker who could address challenges to accessing care in the community.

b) Patients as mentors needed

We welcome patients as mentors for any 3-5 hour period on the Sat Mar 30 from 9am-6pm. Those who would like to join in the hackathon as participants for the 3 days would be incredibly valuable to the project quality. I can offer them 25% (of the $40 cost for patients) off with code Patient25, and certainly can comp parking for those who require it.

https://www.eventbrite.ca/e/hacking-health-in-the-community-tickets-56513376029

Thanks for this Annette

Terrific to hear this. Many thanks for the update and "everyone's support" of this. We cannot but make improvements when knowledge, research is widely shared and understood.

Best, Denyse

Thanks Carolyn - the Therapeutics orgs look very interesting, I'll give them a proper look-see later - though, to be honest, this was a red flag:

"... It's attended by 200+ primary care practitioners, pharmacists, researchers and students mostly from BC...."

I can't help but automatically think that the people most affected by medicines are not invited...except as an after thought for a chosen few, with no animosity toward you, it is awesome you got yourself in the room to give patients a face and voice.

I've been involved in HIV research for a long time and am particularly sensitive to how patients are the last, if at all, to be considered. Yeah, there are recent efforts to engage patients, but it is a big problem embedded in the institutions, and they don't change culture quickly or easily.

I do have concerns about Choosing Wisely as it relates to the 3 complex, chronic, marginalized illnesses I'm involved with -- the vast majority of physicians (like 99%) are uneducated about these very common 3 illnesses (yet they account for over 1 million Canadians according to 2016 CCHS) -- most often, physicians attribute our physical symptoms to psychological factors.

Setting aside gaslighting and causing trauma and medical PTSD and death, our patients are then prescribed psych meds, and denied any further biomedical testing, or access to any symptom treatments (coz symptoms 'all in your head').

The good about Choosing Wisely:

- our patients won't be given unnecessary and potentially permanently harmful psych drugs (for eg, Post SSRI Sexual Dysfunction, akathasia, etc) and other testing / treatment

The not so good about Choosing Wisely:

- our patients won't get access to symptom testing and treatments (there are no clinically used biomarkers or evidenced based treatments for the illnesses themselves .... because they receive virtually zero CIHR research funding)

- our patients won't get access to off-label medications for symptom treatment (like low dose naltrexone, thyroid meds, pain meds, etc)

- collectively, the Choosing Wisely campaign / approach may further embed medical discrimination and medical errors on our patient groups

So you can see why our patient communities have trepidation about Choosing Wisely:

When you're living with a disease that is already medically marginalized, and patients routinely dismissed and misdiagnosed causing physical and psychological iatrogenic harm, to hear that the little bit of appropriate testing and treatment we occasionally receive will be further restricted, takes away hope and faith in the medical system.

As is often said in our community:

"I wish they would stop calling us patients. It implies we receive medical care."

Any way, enough of my rant...thanks for the info Carolyn, have a good day.

Scott

Hi Larry,

I would love to read the article when completed.

Hope you can share.

Virginia

As of today, April 29, three lectures are posted. I hope you find these talks to be interesting. The format is generally a half hour talk followed by a half hour of questions. Watching these talks gives me a healthier perspective on my own feelings of uncertainty, an uncomfortable place where we all find ourselves. Also, reflecting on this background is helpful for my patient partnerships. Happy learning! Best wishes to you. Stay safe.

It is also, I think, a very good example of how to structure a course of this nature. I might well take it again as there is a need to re-qualify. I presume this means it gets updated regularly.

David is a very experienced patient partner and leader so this should be well worth the investment of time.

Thank you! I have registered - I enjoyed the last one.

Good to be cautious, I quite agree! There are plenty of examples of the patient-partnership version of "astro-turf" that I got to know as vexatious for genuine grassroots environmental groups decades ago. "Follow the money" is usually a good rule, but many websites have no such disclosure. Best wishes!

Another great UK-originated group is the James Lind Alliance that strives to identify research priorities set by stakeholders INCLUDING authentic patient and caregiver voices. Their plain language efforts are admirable.

A third group here in Canada is the McMaster Health Forum (mcmasterforum.org) that has decades of experience now in building "citizen briefs" as advance evidence background for "ordinary" citizens who wish to contribute to better healthcare and social services. Take a look at the citizen briefs from the past [HERE](https://www.mcmasterforum.org/find-evidence/products?ProductTypes=Citizen brief;).

Those are all examples of good use of plain language. But I think you are looking for some guidelines? Here is a start...

Try exploring this terrific website addressing health literacy from the NHS in England.
http://www.healthliteracyplace.org.uk/tools-and-techniques/techniques/use-simple-language/

Here is a short list of plain language tools for healthcare from the USA.
https://www.plainlanguage.gov/resources/content-types/healthcare/
Here is a bibliography of plain language resource materials from the USA.
https://www.imiaweb.org/uploads/docs/HLI_Resources_Guide.pdf

Here is a short list of tools recommended by the US Centre for Disease Control.
https://www.cdc.gov/healthliteracy/developmaterials/plainlanguage.html
Here is a Tip Sheet from Australia you might find useful. [www.rch.org.au/uploadedFiles/Main/Content/ethics/Writing Tips.pdf](https://www.rch.org.au/uploadedFiles/Main/Content/ethics/Writing Tips.pdf)

Thanks Annette - have signed up
Best, Denyse