UK research

[SmokeyJoe]

Kate, I've been thinking about this for a while - In fact it seems to me that we need a dedicated space on the forum for medical/health professionals to use - private or not, I don't know.

I did suggest it to Dr Loi way back when but he declined, out of modesty I think. But I know that we've had quite a few health professionals visit the site so far, and maybe it would be good for them to have a dedicated area to discuss things?

What do you reckon?

[Kate]

Thats a good idea if there are enough experts to make it viable. A dedicated area would reduce the amount of redundant chit chat and be a valuable resource - providing the professionals want to use it. It would be nice if we lay people of the forum could read their posts too, we might learn something. Maybe you could post on the board a question asking if anyone eligible is interested to see if it would be worth it.

What I'm trying to do is to see if the UK members can organise and tap into research resources available through the National Health Service or UK non-profit bodies. To be honest I'm not too optimistic that anything can be done quickly but we might be able to start the ball rolling. I chose the UK group because it's the most relevant forum at the moment but if the posts were readable to members from elsewhere I have no problem with that, it would be a good thing.

[Soot]

Kate,

I’m not sure how the knowledge and skills of medical professionals can be harnessed through the forum. The e-world doesn’t facilitate medical examinations but perhaps I’m not being imaginative enough.

What the forum could be useful in doing is recording people’s experiences and there are a number of issues that strike me:

1. The forum is contaminated by being a self-selected sample; i.e., not representative of the population.
2. I don’t see a UK restriction being needed (not for this information collection process) though you may have had a different concept of research approach. The forum seems to be increasing in membership every day. The larger the number of people involved the more persuasive will be any findings.
3. What hypothesis (or hypotheses) would the research be testing? I’d like the research to stay within what the forum can reasonably deliver and this might cover; devices (type, reliability, satisfaction, liquids and custom uses etc) starting profiles (smoking habits, initial objectives), behaviour (e-smoking / smoking experiences) and outcomes (lowered smoking, health perceptions, social outcomes).

The 1st point above is a weakness in the research design but it’s not one that can be redressed. Let’s not make the mistake of attempting to design a research programme that attempts to answer all the issues – research just doesn’t work that way. Each research project will contribute to knowledge.

My suggestion is that the research move beyond the UK forum, that all forum members be asked to join in a “research forum”, that a starting profile questionnaire be designed (through consultation on the forum) and that a progress questionnaire is completed by research forum members at agreed intervals.

Thought I’d just throw in my own tuppence-worth. I'm sorry if I appear critical - it isn't my intention. I'm interested in this research idea.

[Kate]

That's way beyond my capabilities Soot, I wouldn't know where to start to design an international comprehensive study of all aspects of esmoking. I can see that it would be very useful and if you or anyone else sets it up I'll be happy to add my experiences.

What I had in mind was using UK research facilities (not necessarily internet based) to set up a clinical study of the health benefits or effects of esmoking. Maybe with a view towards long term acceptance as an NRT.

My intention here is to see if we have enough eligible members who are interested in trying to kick start studies by doing what we can on this forum. I have deliberately confined this to the UK because it is outside my reach to try to get international backing. We might just manage it in the UK and for now that is plenty to be getting on with for me.

One step at a time. By all means design or present something far reaching and international but that is not what I am proposing here.

[Soot]

OK Kate - I think I see where you're coming from. Given the increased publicity e-cigs have been getting and the rise in forum membership, the forum could be a useful resource for those wishing to conduct a clinical trial - if only as a means of contacting e-smokers.

I'd be happy to participate if such an offer is made but would need to see any proposed research design first and the the credentials of those involved. I certainly won't be a willing guinea-pig to the latest "politically correct lynch mob" aiming to vilify e-smoking.

Beyond being a means for a study to contact e-smokers I can't see how the forum could help. I'm probably just being thick ;(

I DO see the forum as a way of collecting useful information on the impact e-smoking has on smoking. Thanks for your willingness to contribute to such a study. I need to check a few things out - I think it may be possible and worthwhile but it needs to be done properly.

[Kate]

To get an idea of what involvement we might be able to have in research have a look here - UK Clinical Research Collaboration

"What is involvement?

For many people involvement in research means taking part in a research study. For example, this could be by being one of a group of people who are testing a new medicine or by answering questions about your medical history or your life style.
However, there are other ways in which patients and the public can get actively involved in the research process itself, such as involvement in:

* Setting the research agenda
* Making decisions about research funding
* Carrying out research
* Analysing research data or reporting on research findings
* Communicating research findings and getting them into practice.


This is the type of activity we mean when we talk about ‘patient and public involvement in research’."


"What is clinical research?

Clinical research helps us understand how to diagnose, treat, cure or prevent disease. It focuses on people, and many clinical research studies, such as clinical trials, directly involve patients to test medicines or medical treatments.

This type of research is based on examining and observing people with different conditions, and sometimes comparing them with healthy people.
Other clinical studies may not involve patients, and instead use human samples (blood, tissue and cells). Or they might carry out tests such as X-rays, or use existing information."

I've emailed this organisation and am waiting for a reply.

[BarryK]

Hi Kate

Please add me to your list of guinea pigs

Thanks
Barry

[Kate]

Ha, welcome to the lab Barry. Take your clothes off behind the screen please

I've had a reply from these folks - The James Lind Alliance, patients and clinicians tackling treatment uncertainties together. They will be discussing our situation at their next meeting and will get back to us when they can after that.

This was another message I received from them (I hate copying private emails to public forums but in this case I think we are all being addressed):

Dear Kate,

Whilst your email has been forwarded to the James Lind Alliance
Monitoring and Implementation group for discussion, I thought I would
take the opportunity to offer an opinion on possible progressing the
question to a research question.

I am a firm believer that no new research should ever be undertaken
without a systematic review having been undertaken. It is unethical to
do so, as quite often, following a rigorous and systematic search for
possible relevant trials, we can then set the research question in the
context of what is already known. Whilst the outcome of any systematic
review might be that there is no evidence, given what you say, it is the
most ethical step to undertake. It is also a requirement that all new
research should be set in the context of a systematic review.

My personal preference would be for you to contact the Cochrane Tobacco
Addiction Group, of whom Kate Cahill is the Review Group Co-ordinator,
whom I've copied into this email, to see if they know of any registered
protocols for this topic. They may also be able to put you in contact
with enthusiastic individuals who might be in a position to help
undertake a systematic review.

Kind regards,

Mark Fenton

I'm going to write back and ask what a 'systematic review' is but I don't see there being any problem personally if it will lead us towards proper research. I'll also email Kate Cahill at the Cochrane group and introduce our group to her.

[SmokeyJoe]

Hi Kate, have a look at the Wiki page on Systematic reviews.

Essentially, all the medical papers that already exist on a particular subject are analyzed according to a standardized set of procedures to see if an answer to a particular problem can be determined by existing research.

I didn't realize it was such an ethical concern within health care practice that one was carried out before new research, but it makes sense.

[SmokeyJoe]

Still, I don't think what we would be doing would constitute research in any meaningful sense, anyway.

Those participating online would only ever be contributing to the anecdotal body of evidence - evidence that still has its merits, but has no clinical value.

That's as far as forum based "research" can go.

It would still be quite useful to have a questionnaire to get the answers. Some data such as the amount of liquid/cartridges consumed etc would provide a good starting point for the further investigation of the topic.