One of the goals of the NHS Future Forum was to put accountability and patient involvement at the forefront of how hospitals and trusts operate. Patient Opinion founder Paul Hodgkin looks at how online technology can quickly and effectively make this a reality.

One of the goals of the NHS Future Forum was to put accountability and patient involvement at the forefront of how hospitals and trusts operate.

The web has already transformed the business world, changing our relationship with sectors such as music, journalism, advertising and retailing and it’s just begun to have a similarly transformative effect on healthcare.

Fifteen years ago the only way to publicly raise concerns about local health services was to get a letter or story published in a newspaper.

The web has changed all that. Everyone from the high street retailer to the local hospital can be held accountable in a public, on the Internet. Through social media anyone can blog, tweet, or post a photo of a dirty ward on Flickr.

All this shifts power away from institutions and towards citizens – but having a voice is not the same as being heard. Without engaging busy staff, the angry just shout louder while the quiet folk leave.

This puts the onus squarely on health services to proactively interact with patients in an authentic and engaging way, and with the wealth of tools available thanks to the internet and rise of social media, there is no way they can shun this responsibility, while maintaining public credibility. 

We all know that the experience of being a patient is central to understanding the effectiveness of services, and how they can be improved. And the web is becoming a vital tool for listening to patients.

On Patient Opinion we ask patients and carers to share their stories of recent health care experiences with other people. We publish them for anyone to read and learn from. We tag the stories, and link them to the relevant part of the NHS system so that health care providers and commissioners can easily find feedback about their own local services.

The health service can register for free with Patient Opinion, to be alerted to relevant stories and if they want respond public, and even showing when a service improvement has been made as a result of a story.

When a patient shares their story online, there are no pre-set questions, so they can talk about what is important to them. This freedom is not allowed in the standard patient satisfaction survey, and allows patients to raise issues of which staff may be entirely unaware.

As a case in point, the following posting was contributed by a man on an orthopaedic ward in Northampton Hospital:

“I liked the love, care and attention of every member of staff, it was terrific.

“What needs improvement are the toilet seats. Those on the wheelchairs and those fitted to the home toilet, they are useless. They are only made for women, men cannot sit and urinate and open their bowels as men’s genitals will not sit inside the opening. This means one has to [sit down to use the toilet], then stand and turn to urinate. With a knee/hip replacement operation it becomes like mission impossible. I spoke to eight other men who agreed.”

This is a powerful example of online feedback in five ways, by:

  • providing information which only the patient could know;
  • showing how the web is public, yet incredibly intimate too;
  • illustrating that people offer feedback online which they might well avoid doing in person;
  • highlighting that standard surveys of “patient satisfaction” may easily miss the specific, subtle, actionable feedback which is needed to make care better;
  • reminding us that changes which make a real, tangible difference to patients’ experience can be simple, inexpensive and straightforward to implement.

However, it’s not just enough for providers of care to be responding to feedback online, it is vital that commissioners of care and others can join the conversation too. Asthma UK can respond to asthma stories, MPs can respond to what their constituents are saying, and LINks (HealthWatch) can publicly engage with their local population.

This creates structured, public, local, online conversations about health care and services, which helps create service improvements and other impacts. What is new about such conversations is that they are initiated by patients, not managers or politicians, and are held in public for everyone to see.

The question of how best to improve services, while keeping down costs isn’t easy for health services and policymakers to answer. While other sectors have become increasingly accountable to consumers and members of the public, the lack of consumer insight in healthcare has led to a growing gulf between policy and patient experience that needs addressing urgently.

Increasingly, healthcare systems must pay attention not just to the online feedback local services receive, but to how they respond to it. Organisational reputations – with patients, commissioners, regulators and local politicians – will be made or lost on the basis of the quality of online engagement with patients and carers.

Five top tips, to help health services make the most of online feedback

#1: Join the conversation. Patients are talking about their experiences online every day. They have a unique insight into your service so use them as your ears and eyes. The web makes it so much easier and cheaper for you to listen to patients and carers, to let them know that they have been heard, and to keep them informed about your services.

#2: Meet people on their terms. This kind of feedback is here to stay, and it’s increasingly how most people want to communicate. Independent sites are your chance to really meet people on their terms, to hear exactly what they think and to show the wider world that you’re listening.

#3: Really listen. In a conversation, you can tell when someone isn’t really listening to what you’ve got to say. The same is true online. When you’re honestly listening and engaging with the public, they will know and the results will show in your services, and how patients feel about them. Use these stories as a chance to start a two-way conversation.

#4: Be yourself. The language of the web is relaxed and conversational. When you talk to patients online they want to know who is speaking to them – they want to know the ‘real’ person behind the NHS comments. It’s not enough to post a standard response to each story – you can come across as insincere and uncaring. The web is your chance to show the human faces behind your service and that personal touch in your responses.

#5: Do something, and make it stick. Online feedback shouldn’t stay online - it should change services for the better. Make sure your staff see feedback about their services, and can act on it. With the web, patient and carer experience can be involved in every part of your service provision.

In practice

A commissioning manager for substance misuse services talks about how web-based patient feedback has helped shape the services he commissions

“The involvement of service users and carers in the planning of their care, service delivery and commissioning is a strategic priority for us. Patient Opinion has been an invaluable addition in that it has created an opportunity for service users and carers to comment on the issues that affect them and their care in ‘real time’, and for service managers and the commissioner to respond in a positive and constructive manner.

“Patient Opinion staff, the commissioner and service user advocate met with and briefed front line staff, managers, service users & carers on how the website worked. Feedback from the site is placed in the reception area and is also being used in performance meetings between the commissioner and service provider.

“The volunteer group, who meet and greet people as they come into Ashley House, are also being active in promoting the benefits of the site. Service providers have also agreed that they will encourage feedback from service users & carers following medical or care plan reviews allowing all involved to check on the impact treatment is making on people’s lives.

“Patient Opinion is also a regular agenda item at both the provider management team meeting and the staff forum.  Reception staff also encourage those waiting to complete a feedback form, and shortly there will be a computer in the waiting area to make access to Patient Opinion easier.

“Everyone involved at Ashley House – staff, service users, carers - have positively welcomed the introduction of Patient Opinion.  It has been seen as an easy and flexible way to promote involvement by everyone in the development of services, as well as being a useful way of celebrating success, and resolving issues.”

Steve Eastwood, joint commissioning manager, Halton Drug Action Team (DAT)