Making misleading health claims online just got a little more problematic

I’ve developed several Google custom searches to make it easier to pick though the data and identify practitioners making misleading and potentially dangerous claims. These custom searches are like having a version of Google that limits itself to the websites of specific groups of alternative practitioners. They're not perfect - you'll get false positives as well as false negatives. But they do work very well.

Here are Google search engines limited only to websites belonging to members of:

• British Chiropractic Association
• Scottish Chiropractic Association
• McTimoney Chiropractic Association
• General Osteopathic Council
• Complementary and Natural Health Council
• Alliance of Registered Homeopaths
• Kinesiology Federation

You might find, for instance, that there are still some British Chiropractic Association members claiming to treat colic. Or you might find that some CNHC members are claiming they can treat ear infections by sticking a candle in your ear. Or maybe you’ll find a homeopath that is telling people that magic sugar pills can help with eczema.

Google's custom search system is far from perfect. It randomly seems to drop results, then pops them back in again. Text that is clearly found on many sites can't be found. But I expect this to improve over time as the indexing improves.

Despite these problems, if you're making misleading claims it’s now far more probable that you'll get caught. Fingers crossed that whoever finds them hasn't got FishBarrel installed.

There is little evidence that it doesn’t work

When Maggie Dunn and Maggy Wallace of the Complementary and Natural Healthcare Council spoke at Leicester Skeptics in the Pub earlier this week, I certainly got the impression that they were, at least to a certain extent, able to be swayed by rational argument.

I think they genuinely took something away from the Q&A session, yet there was one thing that they repeatedly said both in the Q&A and during our dinner beforehand that was (a) important and (b) not responded to. I wish to address this point here.

When faced with points made about the fact that there was no evidence for the claims made by a lot of the practices they regulate, their response was words to the effect of “but there is little evidence that it doesn’t work”.

The argument offered in opposition to this was simply that the onus of evidence is on the person making the claim. While I agree with this, it is more of a custom in argument rather than a valid point. However, there are reasons why this custom is observed that I believe are more influential than simply stating it.

There are two points that are implicitly made when someone points out that there is “no evidence that it doesn’t work either”:

1. That in the absence of knowledge, the probability of being right or wrong is 50/50.
2. That in the absence of knowledge, it is ethical to take a position and communicate it authoritatively.

Both of these points are incorrect.

The human body is an incredibly complex organism, and there are potentially billions of possible medical interventions, only a small handful of which are likely to work for any given ailment.

Even if we find that a given intervention is indeed useful, the probability of it being useful for any particular disease is still small. I can think of no intervention that works for most diseases.

If you were to make one reasonable and thought-through assumption about a drug’s possible effects from extensive knowledge of chemistry and biology, there is a good chance you’re going to be wrong when you apply it to the complexities of the human body.

But if you were to make an assumption based on no knowledge whatsoever, it would be highly likely that you are wrong. What’s more, the principle of Occam’s razor dictates that the chances of you being right will diminish with the number of assumptions made.

For instance, take reflexology. The first assumption is that various parts of the body are somehow connected with pathways to various parts of the foot. The second assumption is that massaging near one end of a pathway will produce an effect at the other. The third assumption is that this effect will be clinically beneficial. The forth assumption is that reflexologists have correctly mapped which positions on the foot are connected to which organs.

The likelihood of any of these single assumptions being correct in the absence of any evidence is miniscule. But for reflexology to be effective, all of these assumptions would have to be correct.

Even if we assume that the chance of each being correct is 10%, a ludicrous overestimate, then the chances of the therapy working would be a tiny 1 in 10,000.

But, for the purposes of argument, let’s imagine we live in a strange universe where the probability of any intervention being efficacious for any disease was the same as a coin toss landing heads.

Would it then be ethical to make claims of efficacy for an untested intervention?

I think not.

By making an authoritative claim that the intervention works, you are implying that you have a greater knowledge of the intervention’s efficacy than someone who is ignorant on the subject. In the mind of a person hearing your claim, the probability of efficacy will now be significantly higher than 50/50. After all, they heard it from someone presenting themselves as an expert.

If you were to ask a person who has never studied the efficacy of reflexology if it works for arthritis, the only honest answer they would be able to give would be “I’ve never studied it but in the absence of evidence it is unlikely to be effective”. For reflexologists, having never tested their treatment’s efficacy, any other reply is dishonest.

OfQuack launches six-month bullshit amnesty: the regulator that doesn’t regulate

Regular readers of this blog will know that some time ago I began making complaints to the Complementary and Natural Healthcare Council about reflexologist members who happily promote their bogus treatments despite the fact that there was not a jot of evidence to support them.

The CNHC has now informed me that for the next six months, they will no longer be processing any complaints that are similar to the ones I’ve submitted. By similar, I take this to mean complaints regarding practitioners who mislead their clients by making unjustifiable or false statements, including practitioners who have already been cautioned by the CNHC for doing it before.

The CNHC ruled in my favour of my original complaints, and told the members to stop making the claims, giving them until the end of March 2010 (4 months!) to remove them from their web sites. So now the four months are up, how many web sites have changed? I went back to look at 13 of the web sites I originally complained about.

Of the 13, two of the websites no longer exist which left 11 I could check.

Three of reflexologists seem to have toned down the claims, though continue to make them:

• Linda Pate seems to have prefixed her claims with the statement “there is a view that”.
• Lina Ramchand perhaps believes that her claims that reflexology releases toxins, can help with "infertility issues" and can "lead to easier child birth" comply now that she’s put them within quotation marks.
• Siobhan Elliot seems to have removed the claims to treat colic, IBS and arthritis from her site but now states “it is believed reflexology may be useful” for pregnancy and fertility. Her site invites you to request more info on reflexology, when I asked I was sent a word doc that claimed to treat IBS. Her page on reflexology links to another site that makes the claim that reflexology has anecdotally been shown effective for migraines, fertility, sleep disorders and hormonal imbalances.

Only one reflexologist has removed the bogus claims from their site. The other seven continue to happily promote their bogus treatments on their web sites on April 1st 2010, the day after the deadline they were given to remove the claims:

• Carole Armstrong claims that reflexology "may help with a variety of conditions both acute & chronic including sleep or hormonal problems, back pain & neck pain, digestive problems such as IBS".
• Linda Walker still makes claims for hay fever & arthritis
• Nuala Bent still claims that Reflexology “is helpful for many conditions including: Sinusitis, Menstrual Problems, Menopausal Problems, Stress, Migraine, Back Pain, Arthritis, Sciatica, Frozen Shoulder”
• Hazel Parry still promotes reflexology for “migraine, arthritis, sleep disorders and fertility issues.”
• Marguerite Gunn still mentions reflexology as a treatment for asthma, joint problems, back pain, colds/flu, hay fever, allergies and infertility.
• Mascha Mieris still advertises reflexology for “Back Pain, Migraine, Headache, Infertility, Arthritis, Sleep Disorders, Sports Injuries, Hormonal Imbalances, Digestive Disorders, stress-related Conditions.”
• Alison Graham continues to promote reflexology to “improve digestive function, lower blood pressure, improve sleeping patterns, balance hormonal problems and benefit the immune system.”

But maybe all of these practitioners had made the changes within their practices, and just failed to update their sites?

No.

I phoned four of the practitioners. Carole Armstrong was more than happy over the phone to tell me that reflexology “can help” with arthritis. Linda Walker claimed to treat both arthritis and hay fever. Hazel Perry said that reflexology “can help her” referring to my mother’s fictitious arthritis. Sharon Dean, the only reflexologist who had removed the claims from their web site, was told me that “some people believe it can” help with infertility problems, though she did clarify that this was “not proven”.

To see what the CNHC would do about their members continuing to flout their regulations in spite of an existing ruling against them, I submitted a second complaint about Linda Walker. I included email evidence that Linda Walker was still making the same claims as before.

The CNHC told me that they would not be investigating this complaints, or any complaints like it. They “would not be able to action any complaints of a similar nature to those you have already submitted for six months from the date of this letter”.

The CNHC, it seems, now refuses to investigate complaints about its members making misleading or unjustifiable claims – even against those it has already ruled against.

Its members have shown their lack of respect for any decision made by the CNHC by not removing the claims from their web sites.

How can the CNHC still consider itself to be a regulatory body if it no longer regulates?

The CNHC won't be publishing my complaints

Following my complaints to the CNHC about 14 reflexologists claiming to treat specific diseases without any credible evidence, you may have noticed that nothing has yet appeared on the CNHC’s decisions page.

I contacted Maggie Dunn about this matter. It appears that because my complaints were dealt with before it got through to the conduct and competence committee, they do not intend to publish the details on the web site, nor do they intend on ever naming the offending practitioners.

I do not believe that they intend to go any further than this press release published in December 2009 congratulating themselves on a job well done.

With still no clarification from the CNHC on what practitioners are allowed to claim, it seems likely that there are many more CNHC members continuing to do exactly the same with no worry about regulation.

Maybe it’s time to submit a few more complaints.

The CNHC wishes to place on formal record their thanks to Simon Perry

When the Complementary and Natural Healthcare Council (CNHC) decided to start letting in reflexologists, I started sending in complaints about them on the same day that they joined for claiming to treat disease with magic foot massages.

The CNHC has now upheld my complaints, asked the reflexologists to stop making unjustifiable claims, and informed me of their intention to contact all registered members to issue advice to all registered practitioners.

Oh, and they formally placed on record their thanks to me for "bringing this matter to their attention".

The CNHC’s Code of Conduct, Performance and Ethics states:

15. You must follow CNHC guidelines in relation to advertising your services
Any advertising you undertake in relation to your professional activities must be accurate. Advertisements must not be misleading, false, unfair or exaggerated. You must not claim that your personal skills, equipment or facilities are better than anyone else’s.
If you are involved in advertising or promoting any other product or service, you must make sure that you use your knowledge, healthcare skills, qualifications and experience in an accurate and professionally responsible way. You must not make or support unjustifiable statements relating to particular products or services. Any potential financial rewards to you should be made explicit and play no part at all in your advice or recommendations of products and services that you give to patients, clients and users.

The key line in that paragraph is:

You must not make or support unjustifiable statements relating to particular products or services.

Now have I missed something here? The whole point of Complementary health is that you can make claims of efficacy without justification. Don’t get me wrong, I personally believe justification to be extremely important. My point is simply that the regulatory body is exclusively for practitioners who don't share this view.

So I started my little project. By searching for practitioners on the CNHC web site each day I could find out who joined. I actually wrote a computer program to do this as it takes multiple searches to get all the results. I would then manually check their web sites to see what was being claimed. If they made any unjustifiable claims, I reported them via the CNHC’s complaints procedure. I knocked these complaints out in a few minutes – quick enough to get the point across but so hastily that I failed on my first complaint to correct a copied & pasted spelling error and even added my own grammar hiccup at the end.

The ad suggests that reflexology is suitable for treating babies with colic, IBS and arthritus. She also claims to have experience in treating fertility issues. There is no reliable evidence to suggest that reflexology is capable of treating this issues.

But even with the bad English, it was sufficient to make the point: if the CNHC is going to regulate healthcare then it needs to deal with the question of efficacy.

Yesterday I received a call from the Maggie Dunn, the CNHC’s Chief Executive Officer to update me on the status of my complaints.

The CNHC had received evidence from the practitioners to defend their claims. They had also been in touch with the Advertising Standards Agency. The investigative committee met on Tuesday 24th November to discuss the cases.

They decided that my complaints were indeed covered by paragraph 15 of the code of conduct. All fourteen of my complaints were upheld. The practitioners will now be told to stop making these claims.

Sadly however, the CNHC decided that fitness to practice was not impaired because the unjustifiable claims were not made deliberately. The CNHC has a number of “Profession Specific Boards”. Someone from the board relating to reflexology had advised the investigative committee that it is likely the practitioner had been trained to believe that they could treat these diseases.

Now while I do not find it at all surprising that the practitioner was trained this way, I still take issue with this decision. If a practitioner has undergone training that tells them they can treat specific diseases for which there is no evidence then the practitioner has not undergone proper training. An untrained or poorly trained practitioner is surely unfit to practice.

What’s more positive however, is what else the CNHC now plans to do. It makes no sense for the CNHC to allow new registrants to join, only to be immediately reported by me. Instead, I’m told, the CNHC will now look at the evidence and provide advice in advance.

The evidence review will go beyond reflexology; it will extend to all of the disciplines covered by the CNHC.

The CNHC will then be contacting all registrants to explain what they are allowed, and not allowed, to claim.

I confirmed with Maggie that this advice will not solely relate to advertising. I was told that the advice will make clear that practitioners are not permitted to make these claims within the day to day interactions with their clients.

I also expressed a concern to Maggie over the training received by the practitioners. There are undoubtedly many courses out there teaching that reflexology is an efficacious treatment for many diseases. Would the CNHC be doing anything about these courses?

Maggie told me that as a regulator, the CNHC sees it as their duty to get in contact with alternative health course providers and authors. Given the nature of my original complaint, I expect this will enforce the view that claims must be justifiable.

What would a course on reflexology consisting only of justifiable claims cover exactly? How to spell reflexology?

This is so important, and so surprising I feel I need summarise in bullet points:

• CNHC will tell practitioners to remove claims they cannot justify.
• CNHC will conduct a review of evidence base for regulated therapies.
• CNHC will contact all registrants to instruct them not to make claims without justification.
• CNHC will contact complementary health course providers and authors to instruct them not to make claims without justification.

It is my view that adhering to the CNHC’s guidelines will make it impossible to practice complementary medicine.

Could this the end of the CNHC? It would be hugely ironic if forcing its members to act ethically became the cause of its demise.

Finally, Maggie told me that the investigations committee had decided that they wished to “place on formal record their thanks to Simon Perry for bringing this matter to their attention.”

You’re welcome.

[Original] The CNHC wishes to place on formal record their thanks to Simon Perry

Having taken some very fine advice from someone I greatly respect, I now realise that this article wasn't very good. Well, it was rubbish. I've rewritten it here without taking 14 paragraphs before I get to the point - so read that one instead.

The Complementary & Natural Healthcare Council, or CNHC, started its operation of registering practitioners at the beginning of 2009. Its stated key purpose is to:

“protect the public by means of regulating practitioners on a voluntary register for complementary and natural healthcare practitioners.”

Practising evidence-based medicine has some difficult constraints. Firstly, you need to be able to show your intervention to be effective. It’s considered unethical to just make up ideas ad-hoc and market them as an effective medical intervention. Secondly, in order to avoid a repeat of the thalidomide disaster, you need to be able to demonstrate that your intervention is safe.

But all this is very difficult. It requires a lot of training. It means you can’t get your products and services to market without checking them. But what if there was a way we could avoid the hassle of checking the evidence for efficacy? What if there was a way we could practice without checking our interventions were safe? What if instead of going through the trouble of medical training, we could take a part-time evening course at a local college and be guaranteed a pass because the course content consists of no actual knowledge?

Welcome to the world of Complementary Healthcare.

Now I don’t think I’m the first person to point out that if you are going to regulate any type of healthcare, then the fundamental points you need to cover are (i) ensuring interventions work, (ii) ensuring interventions are safe, and (iii) ensuring practitioners are adequately trained.

But this is already subject to statutory regulation. It’s what we call medicine. The whole point of Complementary health is that the practitioners can’t be bothered with all that.

What on earth does the CNHC intend to regulate?

The CNHC’s Code of Conduct, Performance and Ethics states:

15. You must follow CNHC guidelines in relation to advertising your services
Any advertising you undertake in relation to your professional activities must be accurate. Advertisements must not be misleading, false, unfair or exaggerated. You must not claim that your personal skills, equipment or facilities are better than anyone else’s.
If you are involved in advertising or promoting any other product or service, you must make sure that you use your knowledge, healthcare skills, qualifications and experience in an accurate and professionally responsible way. You must not make or support unjustifiable statements relating to particular products or services. Any potential financial rewards to you should be made explicit and play no part at all in your advice or recommendations of products and services that you give to patients, clients and users.

The key line in that paragraph is:

You must not make or support unjustifiable statements relating to particular products or services.

Now have I missed something here? The whole point of Complementary health is that you can make claims of efficacy without justification. Don’t get me wrong, I personally believe justification to be extremely important. My point is simply that the regulatory body is exclusively for practitioners who don't share this view.

So I started a little project. The CNHC’s web site allows you to search for practitioners. Each day, I would look at which new practitioners had joined, check their web sites and report them if they made any unjustifiable claims. If they did, I reported them via the CNHC’s complaints procedure. I knocked these complaints out in a few minutes – quick enough to get the point across but so hastily that I failed on my first complaint to correct a copied & pasted spelling error and even added my own grammar hiccup at the end.

The ad suggests that reflexology is suitable for treating babies with colic, IBS and arthritus. She also claims to have experience in treating fertility issues. There is no reliable evidence to suggest that reflexology is capable of treating this issues.

But even with the bad English, it was sufficient to make the point: if the CNHC is going to regulate healthcare then it needs to deal with the question of efficacy.

I intended to send these in every day as new members joined. My persistence lasted about 5 days – it takes time and is very boring work. I drew it back to looking every week, but by that time there were so many members that the task of checking was daunting. In total, I think I only complained about 14 practitioners.

These were the first complaints that the CNHC has received. At this time of writing, I believe I am the only person ever to have complained to the CNHC.

Yesterday I received a call from the Maggie Dunn, the CNHC’s Chief Executive Officer to update me on the status of my complaints.

The CNHC had received evidence from the practitioners to defend their claims. They had also been in touch with the Advertising Standards Agency. The investigative committee met on Tuesday 24th November to discuss the cases.

They decided that my complaints were indeed covered by paragraph 15 of the code of conduct. All fourteen of my complaints were upheld. The practitioners will now be told to stop making these claims.

Sadly however, the CNHC decided that fitness to practice was not impaired because the unjustifiable claims were not made deliberately. The CNHC has a number of “Profession Specific Boards”. Someone from the board relating to reflexology had advised the investigative committee that it is likely the practitioner had been trained to believe that they could treat these diseases.

Now while I do not find it at all surprising that the practitioner was trained this way, I still take issue with this decision. If a practitioner has undergone training that tells them they can treat specific diseases for which there is no evidence then the practitioner has not undergone proper training. An untrained or poorly trained practitioner is surely unfit to practice.

What’s more positive however, is what else the CNHC now plans to do. It makes no sense for the CNHC to allow new registrants to join, only to be immediately reported by me. Instead, I’m told, the CNHC will now look at the evidence and provide advice in advance.

The evidence review will go beyond reflexology; it will extend to all of the disciplines covered by the CNHC.

The CNHC will then be contacting all registrants to explain what they are allowed, and not allowed, to claim.

I confirmed with Maggie that this advice will not solely relate to advertising. I was told that the advice will make clear that practitioners are not permitted to make these claims within the day to day interactions with their clients.

I also expressed a concern to Maggie over the training received by the practitioners. There are undoubtedly many courses out there teaching that reflexology is an efficacious treatment for many diseases. Would the CNHC be doing anything about these courses?

Maggie told me that as a regulator, the CNHC sees it as their duty to get in contact with alternative health course providers and authors. Given the nature of my original complaint, I expect this will enforce the view that claims must be justifiable.

But what would a course on reflexology consisting only of justifiable claims cover exactly? How to spell reflexology?

This is so important, and so surprising I feel I need summarise in bullet points:

• CNHC will tell practitioners to remove claims they cannot justify.
• CNHC will conduct a review of evidence base for regulated therapies.
• CNHC will contact all registrants to instruct them not to make claims without justification.
• CNHC will contact complementary health course providers and authors to instruct them not to make claims without justification.

It is my view that adhering to the CNHC’s guidelines will make it impossible to practice complementary medicine.

Could this the end of the CNHC? It would be hugely ironic if forcing its members to act ethically became the cause of its demise.

Finally, Maggie told me that the investigations committee had decided that they wished to “place on formal record their thanks to Simon Perry for bringing this matter to their attention.”

You’re welcome.