Personal Health Record user needs, accessibility and buy-in

It is crucial to involve your users, to understand their priorities, needs and context.

A user-centred approach will help you to design a better service.

Involving users and learning from them throughout your PHR development cycle will help you to:   

• understand who all your users are: this could be patients, the wider public, health and care staff, managers   

• understand through testing and research if different user groups have conflicting needs  

• understand accessibility requirements and the needs of specific groups, like those with low digital literacy and lacking support  

• discover what health and care-related tasks your users need to do   

• discover how they do those tasks now   

• find out if, and how, a PHR will help them to do those tasks better   

• involve users in decisions about procurement or commissioning PHR tools: they are the people the PHR must work well for   

• test prototypes of the PHR, with all of your user groups    

• understand how the PHR is actually used and what might be improved  

 Involving users in these ways helps to meet the Five Year Forward View vision of “a new relationship with people and communities”. 

You will need to involve health and care professionals throughout your PHR development or procurement process.

This might involve putting together a team, or a panel of people you can liaise with.

A chief clinical information officer (CCIO) or equivalent should already be involved, but you should involve lead clinicians from the relevant service or pathway.

Clinical buy-in is vital to the success and wider adoption of your PHR. 

Buy-in happens when it's clear that:

• there are benefits for clinicians and patients
• clinicians champion the potential of PHRs to patients and other clinicians
• services can be transformed
• there will be greater patient empowerment
• there will be service efficiencies

Accessibility is for everyone. Everyone has needs.

Accessibility makes digital services more usable, for all users.

It's also a moral obligation and a legal requirement, due to the Equality Act 2010.

Meeting accessibility needs is a vital consideration throughout a project, rather than a 'nice to have'. 

Assisted digital means that users get help to reach services and to use them.

Nobody should be excluded by barriers, due to your PHR system failing to address:

• impairment or disability
• digital understanding and skills
• access to the internet
• access to support

Temporary factors include daily barriers for everyone, like glare on a screen, background noise or doing another task at the same time, like holding a child.

Practical tips

Content should be:

• written well, based on NHS Digital style guidelines
• developed with correct semantic coding, to help screen readers read out content in the intended order
• developed with your users in mind

Guides

• GOV.UK 'Assisted digital support: an introduction'
• GOV.UK 'Dos and don'ts on designing for accessibility'
• GOV.UK 'Making your service accessible: an introduction'
• GOV.UK service manual
• NHS Digital: digital inclusion guide for health and social care
• NHS Digital service manual
• NHS England participation, including statutory guidance

The user needs below have been learnt during our research. The needs are all relevant to PHRs.   

They are summarised from our research interviews, or from PHR research done by others, such as the Royal College of Physicians’ (RCP) user insights report. 

Some user needs also apply to other forms of digital health record, such as Electronic Health Records and Integrated Digital Care Records.   

Communication needs  

• As a person with a health condition, I need it to be easy and secure to communicate with care services, so that I can share or request information about my care   

• As a person with a health condition, or as a health and care professional, I need to be kept up to date about changes to health, so that I can identify and solve problems in a timely manner   

Data quality needs  

• As a person with a health condition who accesses multiple services, I need to see all relevant information and records about my health and care, so that I have a whole picture and can contribute to decisions about my care  

• As a person with a health condition, I need to see accurate information about my health and care, so that I can make confident decisions about it 

• As a health and care professional, I need to trust that information about a person is accurate, so that I can give the right medical advice to the right person   

• As a person with a health condition, I need to track my condition over time, so that I can see the effect that treatment is having on my symptoms and request further consultation if needed

• As a health and care professional, I need to be able to see all relevant information about those I care for, so that I can give high quality care, that is personalised and timely   

Efficiency needs  

• As a person with a health condition, I need ways to save time, effort and money on admin and interactions with health and care services, so that I can use my energy in better ways

• As a person with a health condition, I need it to be easy and simple to manage my interactions with health and care providers, so that I can save time, effort and travel

• As a person with a health condition, I need a number of ways to take part in discussions about my health and care, so that I can save time, effort and travel costs

• As a person with a health condition, I need easy ways to organise my interactions with health and care services, like booking appointments or getting results, so that I can save time and effort

• As a health and care professional, I need it to be easy and quick to deal with pre- and post-consultation tasks, so that I can make the best use of the face-to-face time I have with patients

Information sharing needs  

• As a person with a health condition, I need to contribute my own health and care information to discussions about me, so that I add value to care decisions   

• As a person with a health condition, I need all those involved in my care to see relevant information about my health and care, so that I receive high quality care without having to repeat myself   

• As a person with a health condition, I need to have choice over which information I share about my health and care, so that it is relevant to others and I feel in control

• As a person with a health condition, I need to grant other people the ability to help me manage my health, so that they can communicate with health and care providers on my behalf when I am unable to

• As a health and care professional, I need to have control over what information a patient sees, so that I can safeguard the person from information that might cause them harm or distress  

Usability and accessibility needs  

• As a person with a health condition, I need it to be easy to access and understand information about my condition and my care, so that I can stay informed about my condition and manage it well  

• As a person with a health condition, I need to be able to personalise the information I receive about my health and care, so that it meets my preferences  

• As a person with a health condition, I need to choose if I want to receive extra information relevant to my health and care, such as clinical trials opportunities, so that I can prioritise key information  

• As a health and care professional, I need everyone who would benefit from a PHR to be able to access one, so that nobody is excluded from receiving appropriate care