British Journal of Healthcare Computing

[This interview is part of the BJ-HC Vox Pop: ]

Up to now, it′s been psychologically difficult for patients to say what they want. And threatening for healthcare professionals, even when they do, to take this on board. But now that everyone has a public, but anonymous voice, this is free to change, says Dr Paul Hodgkin, CEO of Patient Opinion, the UK′s leading patient feedback site for the NHS.

How would you define the term ‘patient engagement′ – and what potential does it hold for you within the UK′s healthcare system?
‘Engagement′ is a funny word, isn′t it? Is that engagement as in marriage? Gears? Battle? None are very apt. If engagement means anything, then for me it′s about the fact that everyone in the 21st century (with a smartphone or better) has a public voice. Anyone can blog or tweet or comment on Facebook. This is the end of the patient engagement ghetto - anyone can now get stuck in and every voice matters!

US healthcare IT specialist Leonard Kish has referred to patient engagement as ‘the blockbuster drug of the century′, for its potential to improve the quality of care and lower costs. In what ways do you agree with his assessment?
I think Kish is right – the person with the greatest incentive to get great care to Bed 7 is the person lying in Bed 7. It′s just that up to now it has been psychologically difficult for people in their pyjamas to say what they want. And too threatening (again, psychologically) for healthcare providers to be open to this. So no-one has made any use of this, the last great free resource in healthcare. Now that everyone has a public, but anonymous voice, this can change.

Do you think that technology can play a role in enabling successful patient engagement?
The ‘hard to reach groups′ in this new world are not patients but managers. So the real question is ‘how can technology play a role to help managers engage successfully with what patients are already saying about them?′ There are lots of ways that technology can help. For example Patient Opinion makes it clear how many staff in a variety of organisations have opened one of our automatic email alerts. Making the readership of every story visible increases the pressure on everyone concerned, both to listen and to respond well.

Can you give any examples of where patient involvement strategies are really working to improve patient care?
I think there are lots. Take the most recent story on the Patient Opinion site, for example: ‘Lucy′ has written in on behalf of her friend, who had a difficult experience during an MRI scan at one of the hospitals, due to mild claustrophobia – and has recommendations to make. Just a few hours later, the Assistant Director of Nursing and Care Quality at the hospital has already picked up the comment and passed it on to the relevant department to make changes. And there are many other such cases being reported all the time here.

Does the dynamic between doctors and patients for example need to shift for true engagement and involvement to take place? If so, how can this be accomplished?
Yes, but that will only happen when healthcare professionals see the need. This depends on ensuring large volumes of feedback. One way to do this is to mandate things like the ‘friends and family test ′, for instance, introduced by the DH and being piloted in some NHS trusts. But this is still treating patients as ‘feedback generators′ rather than active participants in their own care. Patient Opinion′s proposed solution is to work with television programmes (Channel 4′s ‘One Born Every Minute′, for example, would be ideal) and to encourage people to share their own stories – and so get into public conversation with local staff from providers, clinical commissioning groups and so forth. Not only would this lead to many service improvements, it also converts viewers into active citizens and would give the NHS free access to an industrial volume of stories.

Power to the people

Paul Hodgkin argues that complaints are escaping their institutional cages, and providers need a new and better response as they take up home on the web.

“Complaint - An expression of dissatisfaction on a consumer’s behalf to a responsible body.” Wikipedia

Time was when complaints were the battery hens of the NHS: small, processed problems living short unhappy lives within bureaucracy’s little iron cages.

Today, complaints have loosed the surly bonds of due process. Now they are free range and as a consequence live longer, feral lives out on the wide open spaces of the web. Just take a look at this story:

“My mum … is too scared to comment about the care that she and others on her geriatric ward are receiving, which she feels is disgraceful. I have been consoling my mum for the past three days and have well and truly had enough but cannot do anything as I fear she will be treated even worse. Things like: her cannula popping out of her arm and being left for four hours, as the nurse reported being too busy; painkillers prescribed first thing in the morning by the doctor, yet waiting ten hours because, again , they are too busy; [ ] not getting her diabetes injection all day as there simply isn't time, then getting told she can't leave because her blood sugar is unable to stabilise.” Patient Opinion story from 2013

Complaints: a whole new genre

Despite complaining about lots of things, this story is not ‘a complaint’ because it is being made anonymously on-line and not to a ‘responsible body’.

In some ways, the traditional meaning of complaint is becoming redundant because the public itself has become the ‘responsible body’ to which citizens appeal for rectification, reform and retribution.

This change is significant – especially post-Francis. Traditional complaints had a sell-by date; they followed due process through to some kind of conclusion.

But these 21st century appeals to the public via online statements are really hard to kill off; blogs and tweets and Facebook stories will be roaming the web like zombies long after all the protagonists have forgotten entirely about them.

All this is deeply frustrating for big old hierarchies, such as hospitals, which have good solid systems in place to handle this stuff routinely and fairly - which all too often also means opaquely, slowly and on their own terms.

Acquitting yourself in the court of public opinion demands very different skills to running a complaints procedure designed by you, for you, and run by you.

Do what you’ve always done, and

For many PALS departments used to dealing with complaints on their own terms, there can be an overwhelming impulse to get them chickens back in their cages where they belong. Here’s the response to the above story:

“[ ] With no ward details I am unable to investigate your concerns further so I urge you please to contact the ward manager or the designated matron for that area so that we can meet with you to discuss these concerns further.”

No argument that responding here is not easy. But asking the author to do something they have already said – twice – that they are too frightened to do is not the answer.

A better response is possible and might go something like this: “From what you say it sounds like your mum has had a pretty bad time whilst she has been with us – I’m really sorry. I know you are too scared to contact us directly so I have discussed your story with all our geriatric wards and as a result we are going to change the following five things….”

As complaints escape from the written page and the formal process, they join a spectrum of public conversations that range from thoughtful commentary to the psychopathic ranting of ‘trolls’.

Navigating this can be tricky for providers, but one thing is certain - the corporate monotone of ‘we-value-your-feedback’ is worse than useless in the 21st century.

Authenticity, humanity, listening are what you need if you are going to win over unhappy patients, families and carers in this new world of the web. Sounds a bit like the things you need to give great clinical care in the first place, doesn’t it? 

Paul Hodgkin

Chief executive of Patient Opinion, United Kingdom

Queensland Health has released its Blueprint for its approach to a better health system.  Their key values include openness, a better service for patients and empowering local communities with a greater say over their hospital and local health services.  Underpinning all of this is placing the patient at the centre of the health system, and that transparency should promote public confidence.

Public confidence is more than clinical excellence.  There’s a psychological dimension to public confidence that goes beyond technical competence.  Technical competence is important, but wins the hearts and minds of patients are the relational aspects of care.

So how can we know, in a transparent way, that the public and patients feel that the relational aspects of care are being implemented, and that they are being empowered to have their say and be heard?  The recent Francis Report released in the United Kingdom, the biggest public inquiry into the NHS since the Royal Bristol Infirmary disaster, highlights the deficiency of health systems and health services to engage patients in an open and transparent conversation about what works well and what does not work so well in the delivery of their care. 

The Francis Report goes onto say that it is recognised that effective patient feedback is a powerful means of scrutinising the performance of health providers in terms of safety and quality. Obtaining feedback from patients and others during an outpatient appointment or a course of in-patient treatment is desirable to offer but not a sufficient means of obtaining a true account of patient and public opinion of a service. It is quite clear that patients and their supporters can be very reluctant to raise concerns or make critical comments at a time when they feel vulnerable.

Here’s one story that clearly highlights this issue https://www.patientopinion.org.au/opinions/58572  of managing patient complaints ‘behind closed doors’. This story, posted by a patient advocate, follows their journey through the complaints process ending in what they said were ‘threatening’ emails from an Ombudsman at the National Health Practitioner Ombudsman and Privacy Commissioner (NHPOPC). Would this have been different if this correspondence were transparent and public? The answer is yes, unless the employee in question at the NHPOPC wanted to lose their job. People need to be held accountable for their actions and patient complaints and concerns should not be allowed to be swept under the rug. We have since contacted the NHPOPC offering them the opportunity to respond but we have not yet received a reply.

Publication of comments online, good and bad, is a powerful tool for patient choice and in forcing providers to address, in public, criticisms made. While making a response is not mandatory, failure to do so is likely to cause the public to draw adverse inferences.

The Francis Report goes onto say that the results and analysis of patient feedback need to be made available to all stakeholders as near “real time” as possible, even if later adjustments have to be made.

Public, transparent, independent and anonymous social media platforms enable this type of productive conversation that is good for the patient and beneficial for health services in order to demonstrate their responsiveness to the voice of the patient and bring about patient-centred, patient-focussed service improvement.

ABC radio interview with Dr Lynne Maher

http://www.abc.net.au/radionational/programs/lifematters/what-matters-to-patients/4256260

Dr Lynne Maher is a critical care nurse by profession, and now works as the Director for Innovation and Design, NHS Institute for Innovation and Improvement in the United Kingdom.

Health services both in the UK and here in Australia are using the patient engagement platform Patient Opinionto receive feedback about the patient experience and what matters to them.

Lynne makes a good point when she says that clinicians know what matters to patients, just from a different perspective, and sometimes it is not what actually matters to the patient. Often issues like processes and risk management are at the forefront of what many clinicians perceive to be of high importance to the patient and what matters most to them. However, from the patient’s perspective the most important issues appear to be about communication and how involved they feel in the decision making process and if they felt they were treated like a person  as opposed to just another number. Not to say that a clinician’s perspective is wrong but perhaps it needs to be more balanced with their patient’s perception of care. As Lynne mentions, health professionals also need to recognise the expertise that patients and their families bring to healthcare, especially patients with cancer and others suffering from chronic disease.

Health services receive complaints as well as compliments however, what is of concern to many patients, who use this formal process, is the treatment of their complaint or compliment. How do they know what happens to their feedback? In the case of a complaint to a health service how can the patient believe that the incident in question won’t happen again? How can clinicians and health services learn from each other about the ‘patient experience’?

The power for the patient voice to be heard lies in having a platform that allows transparency and an opportunity for health services to be fearless in publicly addressing concerns and telling their patients in an open forum that they are listening and value their feedback (good or bad). When the service truly engages with their patients in a non-confrontational environment, patients have tangible evidence that they are being listened to. This online form of engagement can be a scary prospect for the health service but pales in comparison to the angst a vulnerable patient might feel when addressing issues on a personal level with the health service.

There is no shame in recognising that service can be improved, it is how that recognition is managed and communicated to the patient that gives credibility to the organisation. More importantly, we all need validation and patients are no different in wanting their voice to be heard and their concerns, no matter how big or small, taken seriously and used to improve health services.

Patient Opinion CEO Assoc. Professor Michael Greco spoke with Julia Gillard last week about our new innovative patient engagment platform, set to change the way health services, across Australia, engage with their patients.

Patient Opinion Australia welcomes the release of the special report Investigating for improvement by Queensland’s Health Quality and Complaints Commission (HQCC).  The report aims to maximise the health system’s ability to learn from the experience of patients and healthcare providers when things go wrong. 

Our experience at Patient Opinion shows that often patients do not want to complain about their health care experience, but would rather offer a comment, whether good, bad or indifferent. Furthermore, there is evidence that comments posted upon the Patient Opinion website lead to less complaints by patients because they have had the opportunity to “be heard”. 

One of the benefits of Patient Opinion is that it is a public forum which promotes transparency and accountability of health services.  Having an independent site such as Patient Opinion is what the Australian public will find enormously helpful in ‘having their say’ to transform the quality of health services. 

Report - special - investigating for improvement - FINAL - 12 Jun 2012.pdf (1.45 mb)

Whilst cruising the twitter highway I came across this article from the Wesley Mission ‘Mental Health: national study reveals that family carers carry long term cost’

Below is a section from the report:

‘It also recommends that professionals are not only informed about the experiences of the patient but also about the experiences of the family in the caring role. This could be implemented in the workplace and during the tertiary training of health, teaching and allied professionals, by ensuring a working understanding of appropriate responses.

Frontline service providers should be aware of family and carer needs as they treat a person with a mental health issue and facilitate appropriate support and responses.

“Wesley Mission asks both state and federal governments to ensure the capacity of intervention and respite services so that all carers have access to visible and culturally appropriate support when it is needed,” Dr Garner said. “We also recommend greater cross-centre information sharing to provide more effective care for both caregivers and those in their care.”

It relates to Patient Opinion and how our platform can assist mental health professions see through the eyes of a carer to help improve services and support for carers. They play such an important role in caring for loved ones and are often not recognised or paid as well as some health professionals even though as a carer their job is often a 24hrs 7days a week.

If you are a carer or know someone who would like to share their experience on Patient Opinion we (and the Australian public) would love to hear from you so we can help get your story to the right people and let others see through your eyes what it is really like to be a carer.

One thing is for sure on Patient Opinion you will be heard.

 Dr Richard C. Senelick M.D., a neurologist and international speaker, reflects on his experience as a doctor and the impact on him resulting from listening to patient stories.   (http://www.huffingtonpost.com/richard-c-senelick-md/patient-care_b_1410115.html)

It is well worth a read as it describes the dilemma doctors and other health professionals face when using electronic health records and still being alert to the individuality of patients.

The article goes on to say that story telling is an effective tool in health care settings because they:

·         Are mentally richer than simple instructions

·         Engage and involve the patient

·         Trigger empathy

·         Are more likely to be remembered and retold

·         Promote a two-way conversation

·         Transfer knowledge

But what was intriguing was the evidence that patients telling their stories can actually improve health outcomes of other patients who listen to these stories.  The example given was hypertension and the lowering of blood pressure.

Patient Opinion provides a platform for patients to tell their stories, primarily for the benefit of health care providers and their organisations in terms of patient-centric service improvement.  In addition, based on the above evidence, the stories on Patient Opinion can also have a therapeutic effect on patients who read them.  That is why our website has a section which encourages patients to share their similar experiences if they read a story that resonates with them.

After a patient posts their story on Patient Opinion they are able to see how many other people have read their story in addition to how many others have had a similar experience. This can also be extremely powerful especially if the person writing the story feels alone in their experience, perhaps deterring them from seeking help because of embarrassment or feeling that their experience may not be perceived by the health service as being ‘important’.

One story posted on Patient Opinion about better access to mental health services shows that at least 3 other people reading that story have had a similar experience.

Other stories about a chronic pain sufferer at the Mater Emergency in Brisbane and treatment of a broken elbow at Redcliffe Hospital have both been read over 600 times.

 Now that patients have the chance to give feedback on their healthcare experiences on our Patient Opinion Australia website many healthcare organisations such as Medicare Locals are jumping at the chance to sign up and hear what patients are saying about health services in their area.

Our unique on-line patient engagement platform gives healthcare organisations, including Medicare Locals and Local Health and Hospital Networks, the chance to respond to feedback, reward positive behaviours and remedy any negative situations.  The platform is safe, independent, confidential, and accessible and promotes constructive dialogue focused on service improvement.

West Moreton-Oxley Medicare Local is one of the first Medicare Locals to have backed the initiative, and will be facilitating Australia’s first Patient Opinion blueprint in its Ipswich Psychology Clinic.

West Moreton-Oxley Medicare Local Chief Executive Officer Vicki Poxon said the initiative would provide a vital tool in giving the Medicare Local insight into how healthcare services in their region are being received.

“This program is entirely complementary to our role as one of the first Medicare Locals in listening and responding to the primary healthcare needs of our region, engaging with the community and supporting healthcare service providers,” Ms Poxon said.

It is only through a partnership with patients that we can really establish that feedback loop and identify what’s working and what needs improvement.

“It’s interesting to note that in the UK most of the feedback was actually positive, so we are extremely interested in listening to the needs of the patients in our region and gaining a better understanding of the current landscape.”

Ms Poxon said the Ipswich Psychology clinic was the first of many service providers in their region with whom the West Moreton-Oxley Medicare Local will be initiating the Patient Opinion program.

Patient Opinion was recently approached by a senior staff hospital manager after reading a story about his hospital posted on Patient Opinion.  He asked if we could meet to further discuss the purpose and aims of Patient Opinion.  This hospital was not a subscriber to Patient Opinion and during the discussion he mentioned that the hospital had their own website for allowing patients to post their complaints, and he saw Patient Opinion as just a middle-man which would not really add-value to their service. In his opinion Patient Opinion was more like a ‘funnel’ for complaints. In reply, I pointed out the importance of independence and anonymity and that some patients may not wish to be identified because they may feel ‘safer’ to offer their opinion with anonymity. Some patients may even perceive that being identified might affect their current or future care adversely, while other patients may not want to interact with the hospital (eg. shyness, busy-ness), but still want their story to ‘be heard’.

Not only do patients want their opinions of how services can be improved to be anonymous, they also want their opinions to be public so that everyone can benefit from their experience of care.  The hospital manager I met with disagreed with this statement saying that real improvement can only occur when they know who the patient is, and that if the patient doesn’t wish to be identified then there is only so much they can do. In their view patients who shared stories of their healthcare experience on sites other than their own hospital website, such as Patient Opinion, were being vindictive to the hospital. Such a view seems strange and at odds with the theory behind quality improvement as the importance of listening to the patient’s stories is a foundation of healthcare practice and has been long recognised by the medical profession as an important way to engender empathy, reflection, professionalism, and trust.

What really matters is that patients can offer their honest view of the service, and like patient surveys and other feedback mechanisms, this is best done in the safety of anonymity.  To gain a true and rounded view of a hospital one does need to escape from the official line and here is of course the value of independently categorised feedback and opinion. Also important is the opportunity for healthcare organisations to respond to the concerns of patients publically, so that all can see how their organisation is living up to its mission of being patient-centric.

Patient Opinion is not really a middle-man like you might find in other industries such retail. Healthcare is different. Rather, Patient Opinion’s independence provides a vehicle for healthcare organisations to receive honest and constructive feedback from patients, and is a platform for these organisations to demonstrate their public commitment to improving the quality of services.