Health Outcomes Communicator

Great communication ideas for healthcare economists Issue 38 – March 2009

Welcome to the March issue

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In this issue, Laura Goldman ponders whether UK drug appeal procedures are too chaotic and perhaps the winds of change need to blow the cobwebs off the Exceptional Treatment Committees. Julie Stauffman advises that simply number crunching and scrutinising data isn't enough to inform great-aunt Betty about your drug and finally, Robert Hand points out how AMWA is taking responsibility in regards to ethics in medical writing.

“Poisons and medicine are oftentimes the same substance given with different intent .”

Peter Mere Latham (1789 –1875) – English physician and educator

By Laura Goldman (laura.goldman@rxcomms.com)

It is distressing enough to discover that you have cancer, but British citizens who participate in the National Health Service (NHS) often have an uphill battle to secure the proper medication. When the medication is not on the approved National Institute for Clinical Excellence (NICE) list, which is frequently, cancer patients are forced to resort to the bureaucratic “exceptional treatment” committees to seek the medication they need. Dr Mark Saunders, a consultant clinical oncologist at Christie Hospital , Manchester , UK , noted that NICE regularly rejects drugs such as Erbitux for the approved list – even though they are widely prescribed in the rest of Europe – because of the heavy weighting of financial considerations.

The cumbersome appeals process is already affecting British cancer survival rates. Two prestigious medical journals, Lancet Oncology and European Journal of Cancer , published a study that cancer survival rates in the United Kingdom are among the lowest in Europe . An accompanying Lancet editorial said that this research showed that the NHS cancer plan of 2000 was not working and called for changes.

Professor David Kerr, professor of clinical oncology at Birmingham University , said the results of the research were “quite horrifying. A significant proportion of the British public simply has no idea how much the UK is lagging behind many other parts of Europe in cancer treatment.” The Campaign for Ethical and Rational Treatment (CERT) claims that the NHS denies the proper medication to as many as 47,000 cancer patients each year. Kerr, a board member of CERT, argues that this could be easily avoided. “It would take less than £3 a year extra per head of the population to guarantee every patient access to the most effective licensed drugs.”

The Rarer Cancer Forum, a patient advocacy group, completed a study of 5000 appeals to the Exceptional Request Committees over a 20-month period. The majority of the appeals were from cancer patients. The study showed that one quarter of all the appeals was denied. “There is a lack of national uniformity in the appeals procedures for drugs that are not currently covered by the NHS. The process is pure chaos,” remarked Stella Pendelton, who helped conduct the study.

Many critics complain that it is the equivalent of a postcode lottery. “The success and the length of the appeals process often depends on where the patient resides”, said Ms. Pendleton. “We found in our study instances where a particular Patient Community Trust (PCT) did not grant any appeals while the neighbouring PCT approved 96%.”

The Macmillan Cancer Trust, a patient organisation, surveyed the PCTs about their “exceptional request” appeals procedures. Mike Hobday, head of policy at Macmillan, lamented, “At the moment the patients themselves need to navigate a system whose very existence is often hidden from them, has 84 different names, and takes too long. Macmillan wants all PCTs to actively promote their exceptional funding process to patients, ensure the system is transparent, and make sure that the expert panel is made up of people from relevant disciplines.” The Macmillan survey found that only 6% of the Exceptional Request panels are staffed by an oncologist even though most of the claims are from cancer patients.

The report showed that the appeals process is not standardised but capricious and subject to the whim of the PCT. More than three-quarters of the PCTs take the cost of the treatment into account when making decisions. Two PCTs admitted they are more apt to approve requests earlier in the fiscal year. Ten PCTs said they take into account local media publicity when making decisions.

All of the cancer patient advocacy groups want to shorten the appeals process in Britain , whose average length is the longest in Western Europe . A request for drugs that are not already on the NHS approved list can take as long as three months. Dr Rob Glynne-Jones, a clinical oncologist at the Mount Vernon Cancer Hospital in Middlesex, decries, “In some cases the patient's condition will worsen while they are waiting to hear about their request, to a point where further treatment is futile, even if they then get the drug, because in some cases they take a long time.”

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By Julie Stauffer (julie.stauffer@rxcomms.com)

You've scrutinized the data, crunched the numbers and arrived at a solid risk assessment. But how do you communicate that information so that great-aunt Betty can decide whether to take your drug for her heart condition?

While other health economists understand you when you talk about the probabilities, costs and benefits of a particular outcome, it's a different picture when it comes to a math-phobic general public.

So how do you get your message across to someone who may struggle to calculate the price of that shirt on sale for 30 per cent off? Keep the following tips in mind:

1. Express risks in absolute terms rather than relative ones. If patients are told a particular drug doubles their probability of developing liver cancer, for example, many will decide the potential risks outweigh the benefits. But phrase it in absolute terms –2 people in 10,000 who take the drug will develop liver cancer, compared to 1 in 10,000 who don't take it – and their decision might well change.

2. When it comes to probabilities, frequencies are easier to grasp than percentages, so say “6 in 1,000 people will experience this side effect,” rather than “you have a 0.6% risk.” If you mention several different frequencies, keep the denominator consistent to avoid confusion.

3. Include comparisons to other treatments and to no treatments to help patients make a well-informed decision. If taking a particular birth control pill carries a risk of dying from a blood clot, for example, compare that to the risk of side effects from other birth control measures or the risk of dying during childbirth.

4. Different people absorb information more easily in different ways, so include diagrams to reach visual learners. A pictorial representation of the number of people affected – a Paling Palette© highlighting three human figures out of a thousand, for example – is an excellent way to convey percentages, while line graphs quickly convey trends and bar graphs make comparisons easier. (See issues 11, 12 and 13 of Heath Outcomes Communicator for tips on making the best use of graphics.)

5. Avoid vague language that even other health economists or doctors will have trouble interpreting. How frequently does a “rare” side effect occur? How probable is a “moderate” probability?

6. Similarly, avoid economic language that can convey a very different meaning to Joe Public. To you, “a significant risk” may mean a statistically significant risk, but a non-economist will interpret it to be a highly probable outcome or a risk that carries grave consequences. Similarly, a layperson might believe a “conservative estimate” actually underestimates the likelihood of a particular outcome, while a “positive trend” brings exclusively good news.

Ultimately, patients will evaluate risks and make health decisions based on a number of factors, including many that aren't rational. That's not going to change. But by presenting your information as clearly as possible, you can make sure they make a truly informed decision, not one based on misunderstanding or confusion.

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“ Medicine is the only profession that labours incessantly to destroy the reason for its own existence .”
James Bryce (1838–1922) – British politician, diplomat and historian

By Robert Hand (robert.hand@rxcomm)

As of the beginning of this year, the American Medical Writers Association (AMWA, www.amwa.org) has added its code of ethics to membership application and renewal materials. New and renewing members are asked to indicate that they have read and accepted the principles of the code. The goal is to increase awareness of ethical principles and, it is hoped, to contribute to maintenance of high ethical standards among medical writers.

AMWA, despite its name, is an organisation of medical writers from not only the United States but also around the world. Its members come from a variety of disciplines, including academic, pharmaceutical, marketing and regulatory.

The code of ethics itself is not new. It was first developed in 1973 and revised in 1989, 1994, and 2008. The 1994 revision came in response to a Food and Drug Administration (FDA) guideline that proposed severe restrictions on industry-sponsored medical writers. AMWA worked with the regulators to educate them on what medical communicators actually do and also strengthened the code of ethics by adding wording about “scientific rigour” and “fair balance.”

The code, intentionally brief, consists of a preamble that explains the role of AMWA in promoting excellence in medical communication, followed by eight principles to be applied in developing materials in the various media in which medical writers work. Among the principles are recognition and observance of applicable statutes and regulations; application of objectivity, scientific accuracy and rigour; maintenance of the highest professional standards, whether or not the materials they develop fall under the purview of any regulatory agency; and insistence on conditions that allow them to properly apply their own judgment and skills, with refusal to participate in assignments that require unethical or questionable practices. Additional principles include professional development, respect for the confidentiality of materials provided by clients, and expectation and acceptance of fair remuneration of and acknowledgment for their services.

AMWA will not enforce adherence to the code of ethics, and the organisation does not encourage individuals to become “ethics police.” Its goal is rather to increase awareness of ethical issues and principles.

Ethical issues are also addressed by AMWA's sister organisation, the European Medical Writers Association (EMWA, www.emwa.org). EMWA includes on its website its own guidelines on the role of medical writers in developing peer-reviewed publications. The guidelines include the importance of respecting and acknowledging the role of medical writers in the development of scientific publications.

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If you missed any earlier issues of HOC , email duncan.dibble@rxcomms.com for a copy. Just a few of our previous articles are Getting drugs accepted , Healthcare blogs and How to make the most of conferences . A full list is available at http://www.rxcomms.com/hocezine.asp

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