The gbdoc was setup and founded by a PWD. A patient powered community. Or so I thought. When I started digging, it turned out that wasn't quite the case.
The idea of this blog entry is to explain my concerns and suggest a possible way forward. If you don't think my concerns are valid, that's ok, if you do, that's ok too. This isn't a blog entry to force an opinion, just an explanation around my reasons for no longer contributing to the #gbdoc community.
Many will already have seen me tweet about some of these things and be wondering why I need to put it in a blog. Well, not everyone saw those tweets and unfortunately @theGBDOC hasn't responded to a single question I have raised. Rather he has chosen to ignore what I consider to be valid questions and has now blocked me on twitter. That's hardly the response I would expect from a patient powered community founder, so I have emailed him a link to this blog entry. Hopefully this blog post will mean he responds to at least some of the questions and then I can decide if I want to contribute again under the #gbdoc hashtag. For now I will continue to tweet about diabetes using the #doc, #diabetes and #dailyDtalk hashtags. I'd also like to hear your thoughts too, what do you want out of the community?
Before I begin...
Before I start explaining my thoughts and concerns, I want to make a couple of things clear first:
- The PWD community (#doc if you like) are amazingly supportive of each other - I want this to flourish and continue.
- What @theGBDOC has been doing so far in bringing PWDs together is a good and valid thing to do. Something I'd want to promote. Previously the community was spread across many hashtags, having one has it's advantages and a regular tweetchat can draw people in to a community. It takes a lot of work to run a tweetchat properly, so I don't underestimate the work required.
- Where my concern lies is around where the @theGBDOC is going? What are the checks and balances? What ensures that the initial objective of a patient powered community, remains a patient powered community and that it isn't comprised by outside influences?
This isn't saying that the things I worry about are taking place, or that they would happen, or indeed that they should or shouldn't happen. This is about how the community ensures that they know if they do happen and therefore are participating effectively with "informed consent".
So what is @theGBDOC?
The person who has setup the website and runs the tweetchats on a Wednesday night is a PWD, but he is doing this under a limited company structure. Given this structure is in place, it has made me very nervous. So much so that I feel I can no longer contribute to the initiative. Why? Because it changes the nature of the enterprise. I no longer feel this is a patient powered community, it's a company powered community. It just so happens that the person running the company is a PWD, but a company powered community puts a completely different spin on things - for me at least.
Why do I say it's a company powered community?
Well I looked at the owner of the www.gbdoc.co.uk website. You can too by looking at the whois information provided by Nominet: http://www.nominet.org.uk/whois/lookup?query=gbdoc.co.uk
It told me that IPS Ltd is the owner of the site, not an individual, a not-for-profit organisation or some other similar structure, but a limited company.
Looking at other (well run in my opinion) patient powered communities such as the DSMA their websites are registered to the individuals (For example DSMA is registered to the founder PWD http://whois.domaintools.com/diabetessocmed.com). I'll come back to DSMA later as I believe some of the governance of that community could be used here too.
Why does it matter? I've not been sold anything!
It's not just about selling product. The sad fact of the matter is that companies will be interested in harnessing a community like our for alsorts of purposes... to engage in market research, to promote product to us - we are valuable commodities. Sometimes we might want to engage in some of this, sometimes not. Because of the company structure, regardless of what is going on, these are some of the thoughts that go through my head...
Hypothetical 1: How do I know if a question in tweetchat is market research or not?
Hypothetical 2: If a campaign was started "pumps for all", would the reason for starting that campaign be clear? Company driven? Individual driven? Community driven?
Relationships with other organisations
On the 6th November this tweet was made by @theGBDOC:
I haven't seen anything happen in this regard, perhaps it's too early? But I have no idea what this campaign is about, is anyone driving this other than @theGBDOC? Has this campaign been started because of requests from the #gbdoc? I don't know.
What I do know is this company is mentioned a lot by @theGBDOC. Since the 10th September they have been mentioned over 29 times, that is significantly more mentions than any other company! In fact very few other companies are mentioned by @theGBDOC. Why is that? Is @theGBDOC endorsing this company? have a relationship with them? Or is it just that @theGBDOC likes them so much that they are naturally mentioned a lot?
Other companies are mentioned/advertised/endorsed (take your pick) by @theGBDOC, for example the prizes for #bgbingo come from companies but the question I'm posing here is what relationships are acceptable to people?
There is an interesting line in the following article: http://gbdoc.co.uk/gbdoc/News/Entries/2012/12/13_coming_to_a_country_near_you!.html
The IDF is working with #gbdoc to enhance and further extend the #doc and help achieve the ambition of creating a free to use, non-profit, community led resource available to any person with diabetes, friend , family, employer or carer - anywhere and in any language.When I asked what the nature of the relationship was between @theGBDOC and IDF I was confronted by silence, was unfollowed and blocked. Why? Is there something to hide? I think it is a fairly reasonable question to ask. Please tell me more about this work!
Notice I asked what the relationship was with @theGBDOC and not #gbdoc, as no relationship is in place with #gbdoc. @theGBDOC uses these two interchangeably as it suits. They are NOT the same thing! All I am asking for is some transparency. If I engage with @theGBDOC who am I dealing with? A company? An individual? A community?
If theGBDoc represents you, are you happy about this?
Is @theGBDoc a personal account or a community account? Where is the line drawn?
The person running @theGBDOC clearly has strong (negative) opinions of both the NHS and Diabetes UK (and maybe other organisations helping people with diabetes) which I have seen expressed via the @theGBDOC account. An example can be seen here:
Are people comfortable with this? Does this represent the community opinion of these organisations? Has @theGBDOC ever asked you if this is your opinion? It is this kind of comment that makes me think of @theGBDOC as a personal mouthpiece using the community engagement around #gbdoc as an endorsement that many involved might not agree with. Yes @theGBDOC needs a "personality" but for me these types of comments go past that and are comments I cannot endorse or agree with.
What if the GBDoc starts lobbying? Who decides the objectives?
I've already shared the CGM tweet above. What about going to parliament?
This was apparently going in a personal capacity and I'm not sure it was about defending the right to test strips/CGM but rather an All Party Parliamentary Group for Diabetes meeting about access to test strips - what can be done to ensure people have access, not about taking access away. I wasn't there, so maybe my understanding on this matter is wrong. Oh and look - using #gbdoc and @theGBDOC interchangeably again!
Is @theGBDOC going to turn into a political/marketing tool? I hope not!
What if the GBDoc "earns" money from this? Does it matter to you?
Another hypothetical. What if @theGBDOC went out to other organisations asking for money to support initatives? If they went out and asked for £50k of seed capital to "get things started", would that be a game changer?
- Stay the same
Others don't care about the issues and concerns I have raised and are happy for things to carry on as they are. That's fine, plenty of companies out there are providing a good service, such as diabetes.co.uk - it's a trade off you are willing to accept.
- Look to DSMA - take the good bits?
Well @theGBDOC took the tagline, why not go further?
DSMA is run by PWDs. They have a foundation the Diabetes Community Advocacy Foundation, Inc. (http://diabetescaf.org/?page_id=13 again this website is owned by the founder http://whois.domaintools.com/diabetescaf.org) with a board of directors (http://diabetescaf.org/?page_id=9) and an advisory team (http://diabetessocmed.com/about/advisory-board/). Community members are encouraged to contact them to shape future events. The DSMA website shows information on what has happened in the past and shares information on future events, allowing people to think about the subject areas before they take place.
- Something else
Maybe there are other options that you think would be better? Why not share them?
What I'd like to see
If it really is a patient powered community @theGBDOC will be up to having an open and honest tweetchat on the future direction of the community.
Clear differentiation between #gbdoc (the hashtag the community users) and @theGBDOC (the founder of the community), they shouldn't be used interchangeably.
Personally I don't want the @theGBDOC claiming to represent me in the wider world, others maybe happy with him doing so. I feel that if the @theGBDOC is going to represent the community there should be a way to ensure it is representative. It should not be assumed that we agree by default.
Some answers to the questions I've posed rather than silence. All I am asking for is clarification, is that so wrong?
Ideally I'd also like tweetchats to be an opportunity to direct people to good quality information. For example with the recent tweet chat on Christmas it would have been nice to direct people to things like the Diabetes UK Christmas guide: Enjoying yourself at Christmas and when statements are made such as "@theGBDOC DSN told me that shivering can cause increased uptake of glucose from blood #gbdoc" it would be nice to see reputable research backing it up. People look to the @theGBDOC for advice, it needs to be good advice.
Thank you for taking the time to read and I hope you will add to the discussion in the comments below or via twitter.
Further reading (if you aren't bored already!)
Social Media Help Diabetes Patients (And Drugmakers) Connect