FOCUS: HEALTHCARE PR: Patient power - The wealth of internet medical sites has given some patients a sense of strength through knowledge

The UK’s healthcare providers are suffering from a new ailment

sweeping their consultation rooms. Known affectionately as ’jaw-drop

syndrome’, its main cause is the growing number of patients who wave

print-outs of health information from the internet, then ask a string of

sophisticated questions about their condition and possible

treatments.

As patients increasingly hold the medical profession in less awe and

become more health-literate - largely through the internet - some fret

about the changes to the patient-doctor relationship. They fear that the

UK will turn into a nation of desk-thumpers, demanding inappropriate

treatments from their GPs on the basis of misinformation. Others are

more upbeat and view what is widely being hailed as the rise of patient

power, as an opportunity to address broader audiences.

So where is this new patient assertiveness coming from? Is it simply

that more widely available medical information and tighter NHS budgets

mean that people feel they can no longer trust the public sector with

their health?

This may be true in part, but there are other more complicated

factors.

For example, many point to the growing efficacy and organisation of

patient advocacy groups in voicing their opinions and concerns. Patient

champions span almost every therapeutic area, from respiratory problems

to mental health, and range from small one-man bands to national

charities and lobbying outfits. In recent years, many of these

organisations - particularly in areas such as cancer and HIV - have

exerted considerable pressure on public health policy.

But patient power has also grown through increased individualism and a

rise in consumer power in general .

’From John Major’s government onwards, we have had carefully-manicured

soundbites about people living longer and public sector finances being

stretched to the point where we can no longer rely on the nanny state,’

says Gareth Zundell, director of Harvard PR. ’The message coming through

from government has been that the individual has to take some

responsibility for their own health,’ he adds.

This has been delivered by investment in health education as well as

provision, and an emphasis on giving the public ownership of lifestyle

choices such as diet, exercise and smoking. This in turn has created a

hunger for medical information, which has been satisfied with a wealth

of health magazines, newspaper supplements, TV programmes and of course,

web sites.

New research by the Gallup Organisation reveals that more than six

million people in Britain use the internet regularly to keep up-to-date

with the latest treatment options and medical information. Providing

access to other patients, drugs information and research, means that

health has recently overtaken pornography as the most popular reason for

surfing the web.

While the internet is a global resource, the past few months have seen a

proliferation of UK-based health information sites such as NHS Direct

(www.nhsdirect.nhs. uk), netdoctor (www.netdoctor.co.uk) and Dr Mark

Porter’s site surgerydoor (www.surgerydoor.co.uk).

Last December, Medicom UK, which publishes titles including Medical

Monitor and Essentials, launched its healthinfocus web site (www.

healthinfocus.co.uk), which aims to provide a comprehensive information

service for patients, carers and professionals.

This enables users to catch up on on a vast range of topics from the

common cold to Crohn’s disease, whether to look for basic information

about a condition and its management, or the latest clinical

developments.

To ensure the credibility of the Medicom site and its relevance to the

UK health market, a dedicated team of NHS doctors write all the on-line

articles, and information on the site is peer-reviewed by an editorial

board of health professionals.

’A problem is that there are many health web sites that purport to

contain useful information, yet many of them contain statements that are

misleading or dangerous,’ says healthinfocus medical director Dr Peter

Stott.

In addition, to guarantee that patient information needs are met,

healthinfocus has enlisted the support of over 30 of the top UK patient

support groups and medical charities. These include Breast Cancer Care,

the National Osteoporosis Society, and the Alzheimer’s Society.

Another recent development is the increasing access to health

information delivered to consumers by e-pharmacists. On the surface,

this would appear to be a somewhat alarming trend, combining commercial

interests with public health. For example, allcures (www.allcures.com)

which was launched by cScape on 20 January as the UK’s first

full-service on-line pharmacy, will soon handle both NHS and private

prescriptions. But the site carries a warning to use its information as

a supplement rather than a substitute for the expertise of other

healthcare professionals. And according to cScape marketing manager

Theresa Clifford, the company has been working closely with the Royal

Pharmaceutical Society to establish an ethical pharmacy model and iron

out the loopholes for potential drug abuse.

However, there is no doubt that a little knowledge can be a dangerous

thing. Judith Atkins, director of healthcare at Shandwick, says: ’A lot

of information is put out by amateurs, and the internet panders to

hypochondriacs.’ She cites the recent case of a woman suffering from ME,

who on the basis of information gleaned from the web, decided to perform

some DIY brain surgery.

’However, being better informed does help people to be more involved

with their healthcare and have more of a dialogue with their health

provider,’ adds Atkins.

’For instance a middle-aged man with high blood pressure who is

prescribed a certain brand of beta-blockers which may cause impotence,

can go back to his GP, ask about alternatives and negotiate his

treatment.’

For pharmaceutical companies and their PR people this offers huge

opportunities for bringing powerful new audiences into the marketing

loop. Instead of simply pushing treatments at the purchasers and

decision-makers within the NHS, patients can do some of the work for

them.

In part this can be accomplished by ensuring that all the relevant third

parties, such as advocacy groups and on-line information services have

the latest up to date drug information. But increasingly, pharmaceutical

companies are forming partnerships with consumers.

’Allying with patients and patient support groups provides a powerful

way of communicating a company’s educational and product messages in a

credible and balanced way,’ says Mike Kan, director of Hill and

Knowlton’s UK health and pharmaceutical practice.

His team works with consumer groups in the cardiovascular, respiratory

and migraine treatment areas. In conjuction with client Roche, H&K has

also sought to address the often sophisticated concerns of HIV and Aids

patient groups worldwide.

’Our clients listen closely to consumers and are increasingly interested

in speaking their language and building strong relationships with

patient groups,’ says Kan. ’The benefits of this are enormous, ranging

from building greater trust through to increased patient compliance with

treatments.’

However, although interests may be mutual, advocacy groups are becoming

more demanding in terms of what they want to achieve. Whereas three or

four years ago, some organisations may have agreed to a certain amount

of rubber-stamping of pharmaceutical companies’ activities simply to

gain exposure, this in no longer the case.

Last September, Cohn and Wolfe was briefed by Eli Lilly to develop and

implement a UK communications strategy to raise awareness of

premenstrual dysphoric disorder (PMDD), more commonly known as severe

PMS. This was mainly to strengthen the position of Prozac as the first

prescription medication to receive a licence indication for the

treatment of PMDD.

The agency secured endorsement from appropriate third parties, such as

celebrity Sharron Davies and key opinion leaders, including a group of

four UK physicians. However, a vital component was the support of the

National Association for Premenstrual Syndrome (NAPS) which provided

independent consumer support and media-friendly case studies.

The benefits of this relationship were two-way. A partnership was formed

to develop a consumer-focused PMDD awareness leaflet, positioning the

condition as severe but treatable. This leaflet was endorsed by NAPS and

carried its logo, but also carried patient information about how to seek

help for PMDD from a GP, a helpline number and details of the NAPS web

site.

But while the focus is increasingly falling on the consumer, drugs

companies cut the health professionals out of the communications mix at

their peril.

Angie Searle, head of healthcare at Cohn and Wolfe, says this is a

lesson the US was forced to learn with the introduction of

direct-to-consumer (DTC) advertising. ’All this money was spent on

pushing treatments to consumers, but companies forgot to talk to

doctors, so they carried on prescribing the products they knew best,’

she says.

Cohn and Wolfe’s PR activities for prescription drugs are split with

around 60 per cent dedicated to communicating with the consumer, and 40

per cent on traditional NHS and medical audiences.

’We believe that patients are going to be the driver for future

healthcare PR, but it is important to also educate the health

professionals,’ says Searle.

As the Government increasingly struggles to foot the NHS bill,

predictions are that a strong Labour showing at the next election will

usher in a new era of co-payment for prescription drugs. The thinking

goes that if patients are self-funding their treatment, then they

deserve to know exactly what they are buying.

Richard Marsh, head of the health team at public affairs agency

Government Policy Consultants, stresses that it is important not to

confuse the issue of DTC advertising with well-informed patients. ’The

pharmaceutical industry still has to do some convincing of patient

groups in the area of DTC,’ he says.

Clearly a major concern is that the bottom line for the drugs industry

is commercial benefit. But according to Marsh, this does not affect the

mutual interests of drugs companies and patients. ’Pharmaceutical

companies have a legitimate point of view in aligning themselves with

patients, as society has no right to deny the public access to

information about drugs,’ he says.

However, Marsh is anticipating with interest how the political agenda

accomodates more patient pressure in the immediate future. ’The

Government has a centralising tendency, so over the next five years we

will see the extent to which this clashes with patient power,’ he

says.

But in the long-term, Jennie Talman, managing director of healthcare

specialist Chandler Chicco, believes the principles of healthcare PR

will stay the same.

’In most cases, the ultimate aim of a communications strategy for an

ethical product is to influence the consultation between the patient and

doctor to achieve a particular outcome,’ she says. ’The best outcome for

PR is to influence the consultation by facilitating dialogue between

doctor and patient. We need to work hard at finding a common language,

which enables us to communicate product benefits in a meaningful

way.’

It is clear that the healthcare industry will have to devote more

attention to patients in the future. With the growing power of the

internet as a global information resource, this is likely to throw up

all sorts of legislative, security and crisis issues. But as key

developments benefit the interests of the consumer, and those consumers

grow in power, these will need to be targeted in parallel to the health

professionals.

WELLBEING ON THE WEB: ON-LINE SELF-DIAGNOSIS

www.healthinfocus.co.uk

healthinfocus is produced by Medicom International.

It is foremost a web site aimed at doctors, as an in-depth database of

medical information. However, it offers jargon-free advice and

information for the public and is affiliated to NHS Direct.

The site sections are: News Focus, Search this Site, Chat focus, Quick

Browse, Supporter Focus and Clinical Focus. Medical terms are given

jargon-free explanations and patient support groups can be tracked down.

The site has an advisory board of some 40 patient support groups.

www.nhsdirect.nhs.uk

NHS Direct is the National Health Service’s 24-hour telephone advice and

information service. It is supported by NHS Direct On-line.

Its sections are much the same as other sites, although the Healthcare

Guide with its Symptom Guide provides the most user-friendly means of

self-diagnosis. A map of the human body is shown, and when the cursor is

clicked on a particular area a series of questions are asked. Once

answered, a diagnosis and treatment suggestion are given or the user is

told to phone NHS Direct.

The site is very much geared to someone with no medical knowledge. It

also includes an A-Z guide to the NHS - including advice on complaint

procedures.

www.allcures.com

allcures.com is an Essex-based on-line pharmacy, offering advice on

medical problems and treatments.

The site is divided into six main categories, including a pharmacy, a

health information section, a beauty products zone and an advice centre

on alternative remedies.

The health section allows browsers to search an A-Z of diseases. It also

provides news on health and pharmaceutical issues. The pharmacy section

matches medical conditions to the drugs used to treat them and provides

information on the products. The site also includes an Ask the Expert

forum.

www.netdoctor.co.uk

The NetDoctor homepage shows a series of banners for the various

categories available. As well as the obligatory diagnosis, drugs and

definition areas there is also a section on sex and relationships.

There is a guide to pregnancy and childbirth and parents can direct

questions about their children’s health to the site. Ask the Doctor

links users toDr Hilary Jones. There are links to many resources for

medical professionals, including the Medline search engine.

www.surgerydoor.co.uk

SurgeryDoor is produced by Intouch and Health Limited, suppliers of

touchscreen health information kiosks for the NHS. The site reflects

this with a series of ’doors’ for the various headings. Its editorial

team is led by TV’s Dr. Mark Porter. The main areas are Medical Facts,

Healthy living, Travel Health, Alternative Medicine and Health

Multi-store. The site also has news and other services, including

information on immunisations and patient experiences.