You Don’t Know What You Don’t Know

Information is power

Millions of patients in the UK live with long-term conditions. Is there a way to empower patients to be more involved in decisions about theit care, which ultimately reduces pressure on the NHS? It turns out that the solution could be as simple as improving the accessibility of local services and providing better information on wellbeing as part of health.

Me, Myself and I

For both clinical and economic reasons, the increasing number of people living with chronic conditions represents a public health issue of growing importance. There are currently around 15 million people in England living with one or more long-term conditions.i Not only does this impact individuals in a very direct way, but patients with long-term conditions tend to be heavily reliant on the NHS system, and within the UK comprise 70% of the annual expenditure.ii

Knowing this, we may assume that those with chronic conditions spend a significant amount of time with their respective healthcare professionals.iii However, a significant proportion of patients with long-term conditions feel like longer appointments or more opportunities to discuss their connected conditions and symptoms would help them feel in more controliv, and so better-quality signposting and information might help this process.v

In reality, a complex myriad of factors including limited NHS primary and social care resources mean patients with chronic conditions are largely left to self-manage their own condition.vi This means that patients with chronic conditions become pivotal determinants of their own health outcomes and can be actively engaged in monitoring and controlling their own health if provided with the right, high-quality information and support to aid this. vii

People living with long-term conditions tend to spend just ~1% of their time with healthcare professionals. viii

It is this key statistic, and the associated reliance on self-management, that explains how important it is for there people to be provided with high-quality, accessible healthcare information about their care. ix

Is all Information the Same?

In March 2015, a poll of the public, including patients with long-term conditions was conducted by the Patient Information Forum (PIF), a UK membership organisation and network for everyone involved with healthcare information.

PIF reported that 36% of patients with a long-term condition disagreed that they were given helpful information about their condition when they were first diagnosed.x

Not only this, but an estimated >3.2 million patients disagreed that they have enough information to feel confident in discussing decisions about their care with their doctor.xi

This issue is compounded by patients’ reported difficulty in accessing and locating information on their conditionxii. In the same year, Public Health England co-developed a literature review to examine whether improving health literacy can help to reduce health inequalities. The report concludes that 61% of working age adults in England find it difficult to understand health and wellbeing information.xiii

It is easy to see how this presents the NHS with a serious dilemma - millions of people are potentially being excluded from making informed decisions about their health.

Feeling in Control

Providing patients with better, high-quality information about their condition and their options, offers huge potential to relieve burden on the NHS and allow greater sustainability in meeting the needs of an ageing population. Shared decision-making improves decision quality and patient satisfaction, and can result in more cost-effective care.

When properly informed and in charge of their own health, it is predicted that patients will be less inclined to elect for major surgery, request GP or healthcare professional consultations, reduce A&E attendances, emergency admissions, readmissions and overall time spent in hospital. xiv

Our Commitment

We believe sustainable and accessible healthcare is key to creating healthy patients. Since 2016 AbbVie has been one of PIF’s corporate partners and has provided educational grant funding to support PIF’s work. Using this funding PIF has developed a tool to help health services improve the information patients can access. This includes mapping out a 7-step process for creating the ‘Perfect Patient Information Journey’, identifying gaps such as pregnancy, relapse and psycho-social support.

Read more about the PIF Perfect Patient Information Journey

 

i The Kings Fund, Long-term conditions and multi-morbidity, Available at:  https://www.kingsfund.org.uk/projects/time-think-differently/trends-disease-and-disability-long-term-conditions-multi-morbidity. Last accessed: August 2018. Page 1.

iiNHS England, Five Year Forward View, October 2014. Page 6. Available online via:  http://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf Last accessed: August 2018. Page 6.

iii NHS England, Five Year Forward View, October 2014. Page 12. Available online via:  http://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf Last accessed: August 2018. Page 12.

iv Patient Information Forum. Is Knowledge Power?: Using information and support to empower patients. Available at: https://www.pifonline.org.uk/wp-content/uploads/2015/03/Is-knowledge-power.-Using-information-and-support-to-empower-patients.pdf Last Accessed September 2018 Page 8

v The King Fund, Managing people with long-term conditions,
2010. Available at:  https://www.kingsfund.org.uk/sites/default/files/field/field_document/managing-people-long-term-conditions-gp-inquiry-research-paper-mar11.pdf  Last Accessed: August 2018 Page 73

vi The King Fund, Managing people with long-term conditions, 2010. Available at:  https://www.kingsfund.org.uk/sites/default/files/field/field_document/managing-people-long-term-conditions-gp-inquiry-research-paper-mar11.pdf  Last Accessed August 2018 Page73

vii Patient Information Forum. The case for information, 2014. Available at:  https://www.pifonline.org.uk/wp-content/uploads/2014/11/PiF-Case-for-Information-Report-Final-Executive-Summary.pdf Last accessed: August 2018 page 10.

viii NHS England, Five Year Forward View, October 2014. Available online via: http://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf Last Accessed: August 2018 Page 12

ix NHS England, Five Year Forward View, October 2014. Available online via: http://www.england.nhs.uk/wp-content/uploads/2014/10/5yfv-web.pdf Last Accessed: August 2018 Page 12

x Patient Information Forum. Is Knowledge Power?: Using information and support to empower patients. Available at:  https://www.pifonline.org.uk/wp-content/uploads/2015/03/Is-knowledge-power.-Using-information-and-support-to-empower-patients.pdf  Last Accessed: September 2018 Page 7

xi Patient Information Forum. Is Knowledge Power?: Using information and support to empower patients. Available at: https://www.pifonline.org.uk/wp-content/uploads/2015/03/Is-knowledge-power.-Using-information-and-support-to-empower-patients.pdf Last Accessed September 2018 Page 10

xii Patient Information Forum. Is Knowledge Power?: Using information and support to empower patients. Available at: https://www.pifonline.org.uk/wp-content/uploads/2015/03/Is-knowledge-power.-Using-information-and-support-to-empower-patients.pdf Last Accessed September 2018 Page 7

xiii Public Health England (2015) Improving Health Literacy to reduce health inequalities. UCL Institute of Health Equity. Page 6.

vii Patient Information Forum. The case for information, 2014. Available at: https://www.pifonline.org.uk/wp-content/uploads/2014/11/PiF-Case-for-Information-Report-Final-Executive-Summary.pdf Last accessed: August 2018 page 13.