Brainstorming for positive and constructive advocacy ideas

[justinreilly]

I agree with both Bob and BDF! I generally just vote even if i'm not 100% behind an org. CAA would be the only US org I know of I wouldn't vote for, so answers to Bob's questions would be a bit useful, but not too much. However, there seems to be a lot of people who want their questions answered before they will consider voting, so it makes sense to have answers to all these FAQs listed on the orgs website plus putting them in the first post of a contest thread would help people a lot. A lot of people like me don't have time to read thru the whole thread looking for answers.

Making things easy for the voters is key. For some that means having easy access to answers to their questions.

 

[Tuha]

Actually we do; it just isn't being used much. On other forums, Cort would have to tell us about this one, the owners have the ability to send personal emails to each member of the forum. Group administrators can do the same for all members of their group. You type one email, hit send and it goes to everyone into their email (not the personal message system here but your actual email with the address you signed up with). Very effective, fast and simple. Don't ask me why it is not being used by many. I use it for my groups although very sparingly.

I think cort has this ability. I think this would be the best way how to contact the most patients possible and to let them know about an action. everyone is using his email almost daily. How you say the problem is that it is not being used by many. I remember how we informed the other organisations in Chase community giving contest - we just had a list with ME/cfs organisations and we contacted them one by one and asked them about the promotiom of this contest between the members (I dont know which of them really did it but I dont think many). then maybe 1 week later we did the same work with vivint contest. Thats when I told myself that it cannot continue like this - we are all the time doing the same work which takes for days. we need that the most of organisations participate and inform their members. we need to be sure that if you write an organisation - its a right email and that they will take the message to their members. Now you contact an organisation but most of the time you dont get any answer.

so I think we need to know which organisations would like to participate on advocacy effortand they would contact their members. if we will know and we will have their contact then you can send just 1 email and they will know about. now everything seems to me chotic very chaotic and the result is that there are less and less advocacy effort because the patients support is really small

 

[Aileen]

I think that's a good idea. Also for the Citgo contest the forums now have an ad up. I hope they will make use of these tools here on Phoenix Rising more. Of course one needs to find the right balance between reaching people but not annoying/flooding them.

I think I've found a pretty good balance. My groups over on another community are geographically-based. I use this tool for 3 main reasons:

1. To announce the start of an on-line contest (one message only, no follow up)
2. To announce an important meeting or talk by an ME/FM specialist being given in the area that has been announced on short notice. (some people are on these forums infrequently and might miss the opportunity if not notified by email otherwise).
3. To announce that a study is recruiting or soon to recruit patients within the area so that everyone has a chance to look into it right away if they wish (some people may be too late if they don't see a post for several weeks)

If some rare other urgent or important thing comes up I'll send a message but unless it is time-sensitive or I have requested action on something important for the community on the forums and it has not been acted upon I don't send anything. You have to keep these infrequent or people will just ignore them. Also people have enough email to deal with and you have to ask yourself if they really need to spend the energy reading this. I really think before sending those out.

 

[Aileen]

Yes, I know there's some organisations I don't trust, and wouldn't want them to have extra money to disseminate a study/image of ME I diasgree with.
If I'm unfamiliar with the organisation I would read more than 1 source, or read only sources that I fully trust. A significant part of that is someone who challenges the psych and mysterious-insoluble disease angle.

Thanks Willow. This is very helpful. Just to do a bit of a postmortem on the National ME/FM Action Network's "campaign" if we can call it that perhaps some of us assumed that more patients knew more about the organization than they actually did. Since you are in the UK, perhaps you can tell me if the organization is known over there?

 

[Aileen]

To answer the question about voting competitions... Here are some of my thoughts...

I think if we manage to fully inform people about the organisation that is being voted for, and the voting process, then it might capture people's imaginations, and then we are more likely to get them on board. For all of the voting contests that I've been asked to get involved with, I've never been fully informed about the process, including who is organising the votes, why they are giving money away, the voting process, and what the winning outcomes will be. So I get asked to vote without being given a clear and complete picture. And it's quite a lot of work and brainpower for someone to find out all of this for themselves. I also don't get told anything about what the money will be used for.

If I was given a full background of all the information, then it might mean more to me personally, and i might feel like I can 'buy into' the contest or have some 'ownership' of the contest (i.e. it's not just some anonymous process).

But these are just some thoughts... and I don't know that any of this would really make a difference, generally speaking.

To be honest, I do find voting competitions a bit irritating, and I think it will be difficult to win over people because of the irritation factor. The reason that I find them irritating is partly because they are impersonal, and also because there are constant demands to re-vote without any guaranteed outcome.

But when being asked to vote, I think it would be helpful to be told about:

Who is organising the contest.
Why are they giving away money. <snip>
When will the results be known.

I know this is a lot of work to put all this info together, but if I am to feel personally involved in the voting contest, and if it is to capture my imagination, then I think it is helpful to know all the info.

Anyway, these are just my thoughts, in case helpful.

Hi Bob,
Thank you for such a thoughtful reply and yes it is helpful. If I am reading this correctly, your first 2 questions are referring to the company (ie. Vivint). You would want to know something about them. Would a link to the explanation on their site be sufficient (they always explain why they are giving away the money) or would you want someone to write this up for you if you were a non-voter? What do you think?

How much money is involved for winners and runners up.
How many winners will there be.
What personal details do I need to give in order to vote, and what accounts do I need to have (i.e. a facebook account)
How often I need to vote.

In past contests, including current ones, on other forums I have provided the answers to the above questions as well as the end date & time of the voting and step-by-step voting instructions for those who aren't very computer literate.

How many votes are needed in order to win.

I know that I found the daily voting counts of our charities and our main competition very helpful during the Vivint contest although I know it was a HUGE effort. I think that should be done with each big contest. Too much work for the smaller ones like Citigo especially if we are doing well. Do you think that reminders to vote, on the forums not personal emails, are helpful? And updates in the standings for people who may not want to check for themselves even if there is a leaderboard?

How the money will be used by the winning organisation.
What sort of work the charity that we are supporting is involved with.

Again, more knowledge of the charity seeking the money comes up. Perhaps some promotion is needed not only during the contest but before the contest of the charity itself and perhaps what the upcoming project is? We certainly let people know we needed the money to pay for the conference during the Vivint contest (and look what came out of that conference!! ).

 

[Bob]

Hi Bob,
Thank you for such a thoughtful reply and yes it is helpful.

Hi Aileen,

Glad it was helpful.
Just to make clear again, I'm not pretending to be any sort of authority on this, and these are just my personal thoughts, so I don't know if any of my suggestions would help in practise.

I'm trying to think about it from the point of view of someone who isn't usually massively engaged in this type of activity.
And because voting contests aren't something that I'm often drawn to, I can speak with some personal experience.

I did get involved in two large contests over the past year, but I can't remember what they were now. (I have a useless brain for details!)
There was a heck of a lot of activity on the forum in relation to them, and I was drawn in, and I even used a new facebook account.
All the info and activity on the forum was instrumental in getting me involved.
So I think you need to make a big splash on the forum - with eye catching thread titles that draw people in.

If I am reading this correctly, your first 2 questions are referring to the company (ie. Vivint). You would want to know something about them. Would a link to the explanation on their site be sufficient (they always explain why they are giving away the money) or would you want someone to write this up for you if you were a non-voter? What do you think?

Yes, that's right... I didn't understand why Vivint (or whoever) were giving away money... A link directly to the explanation would have been fine, just to satisfy my curiosity... It wouldn't need writing up.

In past contests, including current ones, on other forums I have provided the answers to the above questions as well as the end date & time of the voting and step-by-step voting instructions for those who aren't very computer literate.

Yes, it was all of this sort of info that drew me into the couple of contests that i've been involved with, and made it easy and interesting for me to get involved.
And it was the ongoing updates that kept me involved.

I know that I found the daily voting counts of our charities and our main competition very helpful during the Vivint contest although I know it was a HUGE effort. I think that should be done with each big contest. Too much work for the smaller ones like Citigo especially if we are doing well. Do you think that reminders to vote, on the forums not personal emails, are helpful?

Yes, daily updates, constant reminders, repeating of information, and lots of encouragement on the forum were definitely essential to keep me engaged.
I don't think there can be too much encouragement on the forum, because people can opt in and out as they wish, but you would need to be more sensitive about bombarding people with emails, unless they specifically opt in to receiving daily or weekly reminders for example. Some people might like to get daily reminders, but others would find it intrusive. If you do emails, then it should be very easy for people to opt in and out of receiving them, whenever they want to.

And updates in the standings for people who may not want to check for themselves even if there is a leaderboard?

I'm not sure what you mean here?

Again, more knowledge of the charity seeking the money comes up. Perhaps some promotion is needed not only during the contest but before the contest of the charity itself and perhaps what the upcoming project is? We certainly let people know we needed the money to pay for the conference during the Vivint contest (and look what came out of that conference!! ).

There are always going to be a good many people who aren't very familiar with your charity and exactly what you do. So I think this piece of the jigsaw puzzle is essential in order to capture people's imaginations.
I think that details about the charity and what the money will be used for, and why it will benefit the community, will be what motivates people to get involved in the first place.

 

[Bob]

Thanks Willow. This is very helpful. Just to do a bit of a postmortem on the National ME/FM Action Network's "campaign" if we can call it that perhaps some of us assumed that more patients knew more about the organization than they actually did. Since you are in the UK, perhaps you can tell me if the organization is known over there?

Hi Aileen, I hope this won't disappoint you...
I'm UK based and I'm afraid that I don't remember ever hearing of the National ME/FM Action Network.
I have a brain like a sieve, so it's quite possible that I've come across you before, but just don't remember.

 

[Bob]

so I think we need to know which organisations would like to participate on advocacy effortand they would contact their members. if we will know and we will have their contact then you can send just 1 email and they will know about. now everything seems to me chotic very chaotic and the result is that there are less and less advocacy effort because the patients support is really small

Yes, I think it would be helpful to have an easy way for people to contact local support group organisers and other patient organisations...

I suppose it might be useful for organisers to have their own dedicated news list group, or a forum specifically set up to share info with organisers.

 

[Boule de feu]

Like you, Bob, this is the second time I get involved in a voting contest, and I can say that it is quite exciting. It's just too bad that we did not find out soon enough for the ME/FM National Network. They did deserve our support. However, we are living some exiciting moments right now with the Heroes contest. MARLY is 3 votes away from getting the 8th place. She is cruising along. It feels like we are in the middle of a horse race (not that MARLY is a horse! LOL). Each time I wake up, I feel drawn to check the leaderboard. It will make me feel good to see her win.

Please vote if you can.