Need Patient and Caregiver Advisor Tips for attending conferences

[Annette McKinnon]

Hi to all

We are working hard on getting the Conference Survey Report finished. One appendix we are including is a set of best practice tips for conference funders and organizers based on responses to the survey questions.

As a companion to this we want to provide a tip sheet for patients and caregivers with tips provided by patients and caregivers.

So everyone, If you have some tips please add them in responses.

And if you know of any new conferences or possible areas for engagement please add to the Opportunities Section.

Annette

[Gwen Piller]

Any conferences I’ve been too lanyards usually contain your organization so those with lived experience would state lived experience in some way depending on how that conference chooses to word it.

personally I have never had difficulty communicating or networking at conferences but understand some advisors do not speak up as easily as I do.

i do think it’s inappropriate to single out one group of people such as patients at a conference based on general equity unless you are going to assign a coloured sticker to all lanyards identifying everyone into categories. If all participants had coloured dots there would be equality and no one would be singled out.

singling out Patients in a group is really no different than singling out race, religion, or disability. There may be no harm intended but it’s still wrong.

[Carolyn Canfield]

How do others feel about having a bright visual cue on our name tag to indicate we are patient or caregiver advisors?

I like the designation so I can introduce myself to others like us! It's wonderful to meet each other in person. Networking and a chance to put faces to names that might already be familiar is a big motivation to attend conferences. I also make a practice of introducing colleagues who are health professionals to the patient partners who I may have just met. These opportunities to connect face to face are too rare. I feel we need to use that physical proximity all we can, so seeing a certain colour on a name tag helps a lot.

However, I know some that they feel singled out as "not-really-one-of-us" if there are such identity name tags. What do you think?

Another quick tip from me: really important to have places where people can sit to talk informally over lunch or a break, not just lean up against a wall trying to juggle the catering. I was just at a conference that had a variety of many small and medium sized tables in an airy central space close by the meeting rooms. Here 2-3 up to 7-8 could comfortably sit to talk and still easily access the next session. This felt much more human scale that the usual single hotel ballroom packed with tables for 10 for maximum density and deafening noise.

I'm sure I can come up with more! How about you???

[Annette McKinnon]

Last year I had a badge that actually flashed red if I went over a certain line. Then security would escort me out of the area. After that experience I have embraced being incognito a bit more.

One big one I have is mute your phone. If it rings in a presentation everyone looks at you.

Also, so far I have been in many presentations where people are standing in the back - there's always been a seat up front.

Annette

[Gwen Piller]

Claude, absolutely no offence intended; but, people of colour, race, religion and disability do get dismissed and advisors treated as tokens at tables. For those advisors who struggle in their communities with stigma outside their advisory role due to colour, race, religion or disability may very well be offended by a bright colour on their lanyard that identifies them as different if the rest of attendees are not identified with something similar.

Unfortunately too many people have been touched by prejudice, stigma and trauma and what the typical polite Canadian sees as non offensive can have lasting effects on self esteem, self worth and the effects of post trauma symptoms.

[Claude Lurette]

I've attended and participated in many conferences and the one tip I have to offer is network, network, network. I don't mind the colour designation as it does show there is a patient or caregiver "at the table" and that usually changes the conversation.

As for networking, as mentioned earlier, it's nice to put a face to a name. I've also noticed that PWLE and Caregivers tend to stick together. I usually gather the troops and we split up to ensure we have a full conference experience.

[Ron Beleno]

I think this might be my first post in the PAN Community even though I've been a member for sometime now. Thanks Annette for inviting me to chime in on this discussion about Conference Tips since she knows I do attend my fair share of conferences wearing the hat usually of a caregiver.

Just some tips that have worked for me:

Pre-conference:

• If time permits ahead of the conference, I create my own "conference cheat sheet" of notes on my smartphone (or printed out). This could be just an email to myself of notes, something typed up in a document, a spreadsheet such as Google Sheets, or Evernote that I can update easily. It can include the following...

  • Names and backgrounds of people/organizations I researched who will be attending that I want to try and connect with (i.e. presenters, researchers, a specific organization, other patients/caregivers, past acquaintances/friends)

  • I may try and find a photo of the person ahead of time and add with their name so I can easily look out for them

  • I would have one or two bullet points of what current projects or interests the person who I might connect with is currently involved with

  • Cheat sheet will include a blank area of action items where I can quickly enter any follow-up notes to do during or after the conference

  • It may include some non-conference possible actions to consider such as "visit a specific restaurant", "pick up souvenir for family", "be a tourist and sightsee"

• Business Cards - create some and bring them

  • If you think you'll be attending a few conferences over the year and any other networking event, even as a Patient having a business card ready to hand out to keep the communication going afterwards or just so that you are remembered longer is a good strategy

  • A $20-40 in 250 business cards (i.e. Vistaprint or local print shop) can go a long way to possible opportunities... even if you hand out 100 cards and hear nothing back from any most of them, it can just take one opportunity for that investment to bring back a good return

  • You can have the simplest business card, NAME and E-MAIL or Phone Number is the minimum you require. OPTIONAL can include a simple TITLE/DESCRIPTION/TAGLINE of yourself, City, Personal Website, Twitter Handle, Photo of yourself, Bullet Points of what you are interested in or the work you do, Groups you are affiliated with, and anything else you want to share

  • Keep Business Cards easily accessible either in a pocket, purse, wallet, bag, inside your phone case, or in the back of your Name Tag (attached to lanyard). There have been many opportunities lost at conferences when 2 people have a great networking discussion and when they are done, no one has a business card on them... "I'll look you up and find you" or "When I go back to my hotel room I'll grab one and give you" (never to be seen again:)

  • I usually keep my business cards in the right front pocket and put business cards I receive in the left front pocket... I sometimes take a photo of the other person's business card on my phone quickly as a backup before putting it in my pocket if it is someone I really want to connect with after the conference...

• Set X# of goals you want to accomplish by the end of the conference

  • For example, "I want to meet and chat with 3 patients that I have not met before" or "I want to see 3 Research Posters and chat with 3 researchers" or "I want to keep asking people at the conference if there is someone who is doing work on ______" or "I just want to relax at the conference and attend X# of sessions to learn something new"

• Emergency back-up contact: Does someone you know attending the conference have an emergency contact in case something happens to you? Do you have someone like a family member/friend back at home that has a basic itinerary of the Conference where you'll be at, where you will be staying, travel details, and possibly a contact at the conference in case they are having difficulty reaching you

• Know the name/s (and possibly face) of one or two key conference organizers that you will introduce yourself to at the conference. They don't have to be the head person of the conference... this could simply be the person in charge of registration. At the conference, introduce yourself and befriend them. Who knows, you may need their assistance at some point.

During the conference

• If you are comfortable networking in any environment, then possibly take the lead in starting up conversation... It all starts with a "Hi"... adding a Smile also goes a long way

• For those not comfortable w/ networking, but would like to try and connect with people, sometimes it is simple as "positioning yourself" for the best chance to meet and start-up a chat

  • Where you sit or stand matters. If it's tables, trust your gut and sit at the table that gives you the best vibe and possibly where someone you want to meet is sitting. If you are walking about and everyone is standing (i.e. wine and cheese or during a break), listen to other conversations going on and hang near those that you like... politely listen and make eye contact with them, and likely someone will look at you and say hello.

• Have a Ziplock back, file folder, or something to hold small items like new business cards, receipts for meals/travel, etc.

• Do your best to wear appropriate clothing, but also something that is comfortable to get you through the day.

• For those that use Social Media like twitter

  • learn the #hashtag for the conference

  • if comfortable, consider taking selfies not just of yourself, but of others at the conference with their permission if it's ok to post online

  • if posting a photo that can be considered part of the public domain (i.e. someone giving a keynote, a group photo, research posters), try and find out twitter handles of those in the photo and add them in the tweet

• Not everything should be or is allowed to be shared (i.e. a good presenter will put a "no photo/no camera" icon or sign on specific slides if it contains information/images just for the presentation... If you are not sure whether you should post something, simply ask the other person

• Pace yourself throughout the conference. Some conferences can be exhausting and go-go-go. Make sure you take care of your self physically, mentally, and emotionally. Know when to take breaks, step out of a room, or even take a pass on a session to recharge.

• Be willing to share your voice as a patient, whether that be at a session, workshop, social, or in light casual conversation. Know some of your priority messages and share them where you see an opportunity with others.

• Before the conference finishes or before you leave, quickly reconnect with others that you made a solid connection with or that you plan to follow-up with afterwards. It's a great way to continue building and strengthening that relationship.

So these are just some tips I can think of that has worked for me. I'm sure there are many tips out there.

[Annette McKinnon]

Great tips Ron, and I'm happy to see you weigh in.

Your tips are like conference 3.0, and I have noticed on Twitter how well you do with connecting, and with all kinds of people as well, from the Minister of Health to researchers and patients and caregivers.

Thanks for the good advice

Annette

[Kathy Smith]

I agree with Claude about the focus of attending conferences is to network; to put a face to a name; to broaden our contact base as well as to discover new policies, technologies and opportunities. I also agree with Gwen. I, too, have experienced the proverbial “brush-off” once identified as “just” a PFA. I understand we are the new kid on the block and have a duty to fulfill in conducting ourselves in a manner that both explains and confirms the value of including PFAs.

[Kathy Smith]

I just read Ron’s “conference 3.0” and think it’s great. Chock full of helpful hints. I wonder, since there is work in progress surrounding the conference survey report, if the next step would be for PAN to develop a Conference Guideline with Ron leading the way - IF - Ron is interested and the PAN board agrees?

[Claudia Hernandez]

Nice tips, thanks all for sharing.

Here is my wish list

complimentary registration or preferred rate registration posted

preferred rate for accommodation

physical space for reflection

in advance notification of the conference program about what sessions or activities are not for patients

No patient's breakfasts, but lunches. I attended a conference and the patients breakfast was at 7am .

if there are workshops or group activities, mix audiences so that patients are working with leaders, providers, etc, to give the opportunity to bring a different perspective to the table

asking the organization we are involved with to accommodate an extra night to allow rest. After two days of full lectures and active engagement, many of us wont be in physical/mental shape to travel the same day the conference ends.

[Virginia McIntyre]

Hello All,

These are all great ideas. Attending conferences for me is an opportunity to learn from the presenters and all of you. So I agree network, network. A conference committee could also help people connect prior attending the conferences.

Thanks Ron for all the tips, you have motivated me to do up business cards.

Warm Regards,

Virginia

[Annette McKinnon]

We are planning to provide a tipsheet from patients To patients with the PAN Conference Survey Report for 2018. I hope you are all still filling in the survey this year. ( bit.ly/2Saxg6A )

Here is a draft copy. It's only going to be 1 page long so we welcome your advice in adding, deleting or revising the points we have so far.

Conference tips from patients to patients

Pre -Conference Preparation	Review the program and create a personal schedule in advance Download the conference app (if available). They typically offer more information and people to people connecting options than the website Find the twitter hashtag and check what people are saying Set up a way to keep your notes and key conference details together in one place. For example, a lightweight notebook or phone/ipad file. Keep the conference name & hashtag, handy at the front. Set personal goals -what do you want out of the experience
What to Bring	Pack light, include a water bottle, a few small snacks and cough drops Dress comfortably, in layers and aim for business casual Consider clothes with pockets for phone and cards
During Conference	Record contact info for people you meet in your notebook or take a picture of their business card Make an effort to meet new people - sometimes sit at tables with strangers and try talking to random people. You may be surprised with an amazing conversation Ask questions. You may be feeling new and naïve but people are pleased that you are interested in their work. Change sessions if the presentation is not meeting your needs, Catch the second half of another session. Keep your phone on mute during presentations When the room is full, go to the front as there's always seats there Novices- Pat yourself on the back for being at your first conference. Experienced Participants- reach out to novices and offer support Pace yourself and take necessary breaks; remember to enjoy the experience
Spread the word	Share conference announcements with broader networks ( like PAN) to help novices learn ( what's going on and how to participate) Share information from the conference via twitter, blogs or PAN posts Join patient groups (like PAN) and spread the word

Annette and Donna

[Kathy Smith]

Great tips and handy format. Couple of suggested edits/additions:

Pre: note PFA conference contact person’s name and email &/or Twitter on your hard copy of the agenda or your notepad.

During: I liked Ron’s idea of using a baggie to keep all receipts, business cards etc.

post - thank your sponsor group highlighting your key takeaways

[Gwen Piller]

I found Ron's list overwhelming.

Annette your list was much more manageable, and closer to what I actually do.

I attend as many conferences as I can but can only attend those I can get a sponsored seat for due to my disability income... Conference are just too expensive.

The other issue I have at conferences is the lack of free wifi. Both Ron and Annette mentioned using their cell phone and iPad. I don't own a cell phone and my iPad mini does not have cellular service capability so without a free wifi connection I'm out of luck.

Because of this I don't find much use for social media like twitter.

I always have a notebook to take handwritten notes as it's the only way I retain information. I review material and prepare ahead of time, and take notes, and I network with as many people as I can. I also have my own homemade business cards.

My service dog is a big draw too, most everyone loves the puppy dog. Depending on the harness I use that day, my dog can actually carry things like business cards for me in his harness.

[Annette McKinnon]

Thanks for your input Gwen

I agree that conferences are too expensive. Even when you're funded you can end up out of pocket. I am always finding that I don't have all my receipts at the end when I have to invoice (Plus I hate to invoice)

Like you I always have a notebook, and I just hate it when there is no wifi, or I'm stuck in a meeting room with no wifi.

Ron's conference advice is inspiring and on a whole other level of very directed conference attendance. I am still often at the "really glad to be there" stage and do not have goals for my attendance. But I'm thinking it could be more productive if I did have plans for what I wanted to achieve.

One year at CADTH I had printed copies of the PAN slide deck to deliver to appropriate people, and managed to give one to Brian O'Rourke from CADTH and another to Dr Gigi Osler who was then the President-Elect of the CMA. That helped to spread the word about PAN.

The PAN conference report is still on the way. I would say we're at the final format stage. Please keep filling it our and commenting everyone. The quotes from the survey really help to give it impact.

And of course we were short of quotes from people who have to juggle work and holiday time to be there - there were none from people in that situation.

Annette