Mark Duman and Sarah Smith look at why patient health information is still seen as ‘nice to have’ when it should really be ‘must do’


Commissioners and clinicians should give patients better access to information to stop complaints

The automation of the complete medication loop, from prescription to administration, has rationalised our use of medicine and reduced dispensing mistakes

Despite the policy framework, health information is still far from being properly established as a key service in its own right. Nationally, the “information revolution” is largely focused on shared access to patient records, increasing online transactions and promoting greater data transparency.

When people talk about information in the NHS they almost always mean informatics and data − information about or from patients, not information for them.

‘At a quarter of organisations, there is no one at board level responsible for information’

There are powerful legal, moral, ethical and financial incentives across the UK for providing information as a key aspect of high quality, patient centred care.

So why is it that communication failures account for one in five of all patient complaints, according to Citizens Advice? Why do a third of Patient Information Forum members say that their patient information service is at risk or is being closed?

Why do many patients still receive little or no information about managing their condition, taking their medicines or caring for minor ailments?

Low priority

On the ground, our members tell us that almost half of NHS organisations have little or no staffing resource for health information. The average budget for information, where it exists, equates to 0.006 per cent of a large NHS trust’s budget. At a quarter of organisations, there is no one at board level responsible for information. Information for patients continues to have a low profile and is a low priority for investment.

‘Evidence shows that information provision increases patients’ satisfaction and their positive experiences of healthcare’

We have been making “the case for information” in our work for some time. This year, with funding from the Department of Health and Macmillan Cancer Support, we did a comprehensive review of the evidence about the benefits of proving information.

We found that high quality health information has a positive effect on patients’ experience of healthcare, and their health behaviour and status. There are also good business reasons to justify the investment of more time, money and training in health information provision and support.

This is core business for the NHS and an important motivator for staff. It is part of the statutory duty to improve quality. Even more importantly in this post-Francis world, it is the right thing to do in a values driven health service where the patient comes first.

Engaging patients

Patient engagement is vital to help people manage their health, make informed decisions about their healthcare and reduce financial pressure on the health service.

The key to engagement is the successful communication of information. Where this happens, information translates to greater patient knowledge and understanding. Some researchers call this the “blockbuster drug” of patient engagement.

evidence shows that engaged patients mean lower costs, through:

  • reduced demand for GP services and unplanned care;
  • more appropriate use of services, including screening rates;
  • fewer hospital admissions and less time in hospital;
  • less major surgery;
  • reduced variation in procedures;
  • safer, more efficient use of medicines;
  • greater productivity, lower staff turnover and less absenteeism; and
  • reduced litigation and claims for compensation.

For example, the management of long term conditions accounts for 70 per cent of total health spending. Evidence from the Expert Patients Programme found that 50 per cent of participants reported having subsequently made fewer GP visits, while 35 per cent reported having reduced their medications. Overall, for an investment cost of £400 per attendee, the research estimated an average net saving of £1,800 per chronically ill patient a year.

Evidence from the US shows that more active participants in treatment decisions and self-management incur significant lower costs. More actively engaged patients are also less likely to experience a medical error or be readmitted within 30 days of discharge.

Over here, analysis suggests that if 10 per cent of GP attendances for minor ailments could be avoided through online self-care advice, annual savings would be around £830m.

Positive experience

Current payment schemes provide little incentive to enhance patient experience, yet the evidence shows that information provision increases patients’ satisfaction and their positive experiences of healthcare.

Evidence from the US shows a positive association between excellent patient experience and the market performance and financial health of providers, as well as a positive association between quality and financial performance. With the introduction of greater competition, choice and transparency into the UK’s health system, these factors will increase in importance.

‘Information on its own is not enough. Significant behaviour change will only be achieved by more active educational support’

Our research found that providing consumers with high quality and accessible health information helps to enhance patients’ experience of care. It improves understanding, encourages more confidence in the doctor-patient relationship and increases the ability to share decision making with clinicians. It also encourages people to have more realistic expectations about health outcomes and to be better able to manage their own conditions.

All the evidence shows that information helps to make patients more satisfied and engaged. This includes better adherence to treatment, more effective use of medicines and a reduction in complaints and medical errors.

Information and support

Information on its own is not enough. The evidence shows that significant behaviour change will only be achieved by more active educational support. This is especially important for those with low levels of health literacy and engagement. Without support, health inequalities are likely to widen.

Information needs to be an integral part of consultations between patients and health and social care professionals. Our research highlights the importance of clinicians and specialist support staff acting as “info-mediaries” for their patients − signposting them towards the high quality health information and support they need.

None of this will happen by accident. We call on commissioners, clinicians and providers, and the broader health and care system, to commit to investment in information and support services, and to recognise that:

  • Information is an intervention that affects health and wellbeing and it contributes to all aspects of quality: clinical effectiveness, safety and patient experience. Delivered well, information can be as important as any drug, medical test or surgery.
  • Information must adhere to quality standards. It should be user tested, co-designed and co-produced where possible. Information must also be designed to meet different levels of health literacy.
  • Information production is a highly skilled activity and those who do it need an infrastructure and learning and development opportunities.
  • Information provision must be integrated into health and care delivery. Healthcare providers should have a board director responsible for the provision and monitoring of information and support, with dedicated personnel and resources to deliver it.
  • Health and care professionals should offer information as part of a shared decision making process. The most helpful information and support is personalised to the person receiving it: one size does not fit all.
  • The impact of information provision must be measured. The information given to an individual should be recorded in their care record. It is not enough to measure the volume of information provided: behaviour change and financial impact should be measured too.

We can save the NHS billions of pounds by addressing what the King’s Fund has termed “the silent misdiagnosis” – the failure to fully inform and involve patients in decisions about their care. At a challenging time for the NHS, there is a financial, clinical and moral imperative to support patients with better information. To do any less will continue to compromise quality and waste scarce public resources.

 Mark Duman is chair and Sarah Smith is operations director at the Patient Information Forum