Saturday, 31 March 2012

Patient engagement

An American online radio site, Health in 30, looks at patient engagement in the context of social media. With 4 women's experience and opinions, it makes for a varied read. The over-riding feeling is that engagement is not only necessary, but beneficial, and that online media offers a source for that.

It includes several different but equally valid definitions of patient engagement:  
1. an active choice by a person seeking to understand or improve their health to acquire knowledge, share that knowledge with healthcare professionals and/or the patient community, and take some action or deliberate inaction towards a health goal that fits their personal circumstances and values.

2. It addresses the emotional, physical, spiritual and financial needs of a patient (and, when appropriate, the patient’s family). An engaged patient has the information, resources, tools and support he or she needs to live a life of quality, however the patient defines it. 

Read the full article here.

As a fan of infographics (although this one could be improved design-wise!), here is one (Steve Wilkins, Smart Health Messaging) outlining some techniques and challenges in patient engagement.

"Participative Democracy"

An article in the Guardian interviews Rupert Whitaker, a clinical academic who set up the Terrence Higgins Trust. His extensive experience on both sides of the healthcare system has given him a unique view of it! I particularly love his phrase 'participative democracy', which for me sums up the ideal patient-doctor relationship!

"Medical services," he says, "can never really be health-effective unless you have socialised medicine. But the system has to be a real participative democracy, so it's about the services patients actually need, not those that doctors think they do. The focus has to be: what does this person need to get well, and to stay well."

"We have to see patients as people, not collections of diseases."

"Everyone's exceptional in their own way. Some of my patients, I see them struggling . . . I feel grateful actually, for me: it could have been worse. But I've always been a pragmatic pessimist: I've seen what could go wrong, and I've fought as hard as I can to make sure that it doesn't. And I'm a real fighter."
But a lifetime's work on HIV and Aids (still, despite the success of combination therapies, "a very dangerous infectious disease, the more so because of the degree of complacency that has now crept in around it – people just think, I'll be fine"), a struggle without which "frankly, I'd probably be dead", has, he says, led him to this: the larger issue that HIV represents, "the burden of chronic illness, and how we address it. It's a complex area, how we get and stay well: it's biological, psychological, social, behavioural. But I'm a fighter. The penny will drop eventually."

Health Talk Online

Health Talk Online is the portal of the organisation DIPEx (Database of Individual Patient Experience), and linked to the Health Experiences Research Group at Oxford University.

The quality and experience of the staff behind this project is impressive! How does one get involved in these projects without a PhD or years of high-level DH/NHS experience?!It is so inspiring and exciting to come across projects like this, combining real patient experience with academic credentials!

The website aims to share the experience of illness or a health problem and to provide support for patients and carers who may feel that they are on their own, answer the questions and problems that matter to people when they are ill or have a health-related problem and to help them make informed decisions about their healthcare, provide reliable, evidence-based information about illnesses and health problems, be an educational resource for health professionals and promote better communication between patients and health professionals.

One quote from the website that really stood out to me (partly because of the story-based work I am doing with a charities information service) was this:

"True stories are...nutritious and sustaining. They feed the mind with information and the heart with hope and strength"
 Philip Pullman

Friday, 30 March 2012

What has the voluntary sector done for the NHS?

The Guardian Healthcare Network  has a very poignant article about the value of charities within the NHS.
The backing from medical professionals illustrates the extensive support these charities have. Why? One consultant in the article feels that the "diagnose-treat-discharge" system is flawed and suggested this iterative form "diagnose-treat-review-think again-re diagnose".

Interestingly, he sees these charities and organisations not only as of value to the patient, but significantly as a resource for training clinicians themselves.

Medical charities and support groups do play an enormous and often undervalued role in the health of the nation!

Read the full article here

Pharma-sponsored Information?

Having being brought up with Guardian Weekly and The Constant Gardner, I have some degree of scepticism towards pharma companies, but during my time in medical PR I saw the work that goes into producing some of the medical information. This blog post discusses the role that pharma should play in informing patients. Although the commerical nature of these companies is going to influence their practice, that applies to companies promoting (often bogus or even dangerous) natural remedies too! Which is worse?

As the blog says, there is a lot of research and information that is not in the public domain at the moment. Sharing that, like the new UK Biobank scheme (see here) hopes to promote, can surely create wider benefits for the medical community.

The source of any information should be clearly stated, however, and that applies to pharma too. Weather patients choose to ignore it or not is another matter. But it might help the community as a whole?

Source: Pharma Guapa blog

Online Information

The paper, The Internet as a Course for Current Patient Information, by McClung et al ( 1998) looks at the quality of information available to patients online. A recurring theme in my thoughts and work!

Again, it is America, but UK equivalents of the APP exist. Perhaps unsurprisingly, they found that only 20% were in-line with current APP recommendations, and that the source of the information (even if from a major academic medical center) did not improve the likelihood of compliance.

Another study shows the reading level required to access this information is considerably higher than that held by the majority of the population. Although published in 1999, the issue is still relevant.  
Readability levels of patient education material on the World Wide Web, Graber et al, (1999) Journal of Family Practice

Wednesday, 28 March 2012

Improving care co-ordination

The Kings Fund are working on co-ordinated care for people with complex chronic conditions (although it has an age-related focus).Using case-studies around the country, they are trying to what are effective strategies in improving the co-ordination of care for this subset of patients. They hope to promote and disseminate the lessons they learn.

The project is funded by the Aetna Foundation, who have already awarded grants in this area. Their previous work identifies care co-ordination as a key strategy to improve health outcomes and ultimately lower costs of health care delivery. In contrast to the KF project, some of their work focuses on adolescents, since this subset of patients receive care from a number of places, such as schools for example.

Care coordination is often defined as a patient-centered, interdisciplinary approach where all of a patient's needs are managed across providers and settings in an integrated, cost-effective manner. A recent study published in the Annals of Internal Medicine found that primary care providers for Medicare patients typically share patient care for their caseload with 229 other physicians with whom they should coordinate care. (Source: Aetna foundation)

Watch this space for the outcomes of this project!

Schwartz Center hospital rounds

Schwartz Center Rounds are multidisciplinary forums which bring together hospital staff  to discuss the nonclinical, social and emotional aspects of caring for patients.

A recent Kings Fund article addresses the value of this infrastructure in the UK - Supporting Hospital staff to provide compassionate care:do Schwartz Center Rounds work in English Hospitals?

It is based on a study in the Journal of the Royal Society of Medicine (summarised here). In the US, Schwartz family funded monthly meetings where staff freely and confidentially discussed their feelings about the care of a particular patient. They have been found to be a source of support for participants, benefit patients and team working and could maybe change hospital culture.

The principles sound worth-while. Finding adequate time to devote to it will be a significant barrier though!

Thursday, 22 March 2012 is 'the home of the self-management community', and has a large collection of links, information and news relating to self-management.

QISMET (Quality Institute for Self-Management Education and Training) is described, with an example of some recent work (see here). It is encouraging to see that the self-management community is so official and regulated, to guarantee a high-quality service to patients. I think it gives the field a lot of credibility.

It is very good at signposting to other resources, in this case, the Health Foundation's new £7.5 million programme, Co-Creating Health. It aims to understand how best to put self-management support at the heart of care for people with long-term conditions. From my reading so far, it seems to be very worth-while, addressing the main issues around self-management, and incorporating the high-level strategy one can expect from The Health Foundation.

Jo Bibby, Director of Improvement Programmes at the Health Foundation said, ‘There is compelling evidence that, for people with long term conditions, self management support reduces anxiety and depression; facilitates a better quality of life and enables people to feel more in control of their health’.

Evidence: Helping people help themselves

In May 2011 The Health Foundation published a report reviewing the evidence around the benefits of self-management.

Supporting self-management means providing information and encouragement to help people maintain greater control by understanding their condition and being able to monitor and take appropriate action.

Evidence suggests that supporting self-management works. Supporting people to look after themselves can improve their motivation, the extent to which they eat well and exercise, their symptoms and clinical outcomes and can even change how they use health services.
Many different types of support are important components of the jigsaw needed to encourage self-management, but information provision alone is unlikely to be sufficient to motivate behaviour change and improve outcomes.

Read the full report here.

ENOPE (European Network on Patient Empowerment)

The European Network for Patient Empowerment (ENOPE) is holding its first conference on 11-12th April 2012. It is a shame I can't go, but next year . . . . !

"Issues such as greater access to information and knowledge – increasing use of social media – experience with self-management programs – the new legal requirements for patient involvement – the reorganisation of health care systems – the availability of new technologies – all of these are creating a new dynamic through which patients and citizens are redefining their role in relation to health and social care. We believe this to be the critical shift towards building an approach to health and social care that is appropriate for the 21st century."

A new resource on the ENOPE website details the discussions for the conference - read it here. It covers stakeholders, strategic challenges and lots about the benefits for patients (in specific circumstances, such as LTC etc.!) so makes for useful reading!

Information: suggested by patient or doctor?

A paper, Patient Information-Seeking Behaviours When Communicating With Doctors, by Beisecker and Beisecker (Medical Care, Jan 1990, vol. 2, no. 1), has some interesting findings. The abstract is below. Although not recent, and there has been considerable change in the paternalistic nature of doctors, the findings relating to length of appointment may still be very relevant. Even if the actual time can not be given, patients behaviours may become information seeking if they feel that the doctor has time to see them. From experience, after 10 minutes, one feels that you are clinging on to stay with the doctor

Patients desired information about a wide-range of medical topics, but did not engage in many information-seeking behaviours when communicating with doctors. While desiring information, patients regarded doctors as the appropriate persons to make medical decisions. Regression analyses indicated that patient information seeking behaviours were more directly associated with situational variables (length of interaction, diagnosis, reason for visit) than with patient attitudes or sociodemographic characteristics. Patient attitudes influenced patient information behaviours only for patients with interactions lasting at least 19 minutes, indicating that a longer interaction may be necessary for patient attitudes regarding desire for information and participating in medical decisions to manifest themselves in information-seeking communication behaviour.

See the paper here.

Wednesday, 21 March 2012


The role of the Internet in diagnosis and medical research is huge, and controversial! In  this blog post, there are a few startling statistics;
  • More than 160 million adults in the U.S. have gone online to look for medical information.
  • Two thirds of them begin their Internet health enquiry using a search engine.
  • More than half reported that their most recent web session influenced how they took care of themselves or for someone else.
  • A survey of 1,900 physicians reported that nearly half go online for professional purposes and use Wikipedia as a source of medical information. 

This highlights to me the need to increase referrals to reputable medical information sources, for patients, and also for medical professionals themselves.

Read the full article here.

Source: Kevin MD blog

Monday, 19 March 2012

Self-tracking of medical conditions

For patients with long-term conditions, there can be a long and complicated medical history to convey to a doctor in a very short space of time. I have personally used flow charts, and more recently a table - they are useful as a prompt, and my doctors now have a copy in my folder.

This article shows a very clear time line of a patients long-term condition, and has some interesting thoughts on its value for doctors. It puts great design to great use!

I have also found out about this conference, Brainstorming Design for Health: Helping Patients Utilize Patient-Generated Information on the Web. It was in February 2012 in Washington, so I am going to try and find out more about what was discussed. The design aspect of patient information was not something I had really considered before, but can have enormous impact on the quality of information and its processing by patients!


Patient Experience: An Infographic

I think infographics are a really effective way of presenting information, and here is a very clear one on the patient experience. Additional ones from the same series look at communication and education. It is American, so the context is slightly different, but a large number apply to the health system here. Some of the statistics that jumps out are me below:
  • By conducting interactive care, such as post-discharge calls, organisations achieved a 74% reduction in heart failure readmission rates
  • 50% of patients walk out of the physician's office not knowing what they were told or are supposed to do
  • Physicians often over estimate the topics and duration of what they have talked about with their patients
  • 19% higher risk of non-adherence among patients whose physician communicates poorly than among patients whose physician communicates well
  • 90% of adults have difficulty following routine medical advice
  • Yearly cost of low health literacy to the healthcare system (patients not taking medications and not seeking appropriate treatment) = $238 billion per year
  • In the average physician-patient interaction, patients do 33% of the talking and asks 5 questions, compared to the 25 asked by the physician (some patients ask 0-2, according to Verilouge)
  • Patients with mental health problems engage for a greater proportion of the consultation than patients with physical conditions

Source: BerylHealth, Verilogue, OrcaMD

Patient Experience: Definition

The phrase 'patient experience' is almost a buzz word in NHS language - central to all services. This article from September 2010 published in the Gallup Management Journal has some good background giving context to this phrase! Turns out to be more complicated that I originally thought!

Read the full article here:

Health Literacy

A BMJ study highlights the importance of patient literacy, having looked at the effects in 8,000 adults. Poor 'health literacy' has a significant impact on patient mortality.
Being a patient requires the understanding of a lot of information; prescriptions, test preparations, appointments, doctors questions/answers/diagnosis and any online information. This information, if not understood, can reduce the effectiveness of any treatment and have a detrimental impact on the health of that person.

Thursday, 15 March 2012

Positive Psychology

Martin Seligman is seen as the founder of positive psychology; a branch of psychology that looks at positive thinking and happiness.

Authentic Happiness has lots of background to his work as well as some of the latest work in this area. It links to this BBC page, which has some interesting short videos on happiness.

The most fascinating page is Positive Health: An Overview, where Seligman defines positive health;
 The definition of positive health is empirical, and we are investigating the extent to which these three classes of assets actually improve the following health and illness targets:
  • Does positive health extend lifespan?
  • Does positive health lower morbidity?
  • Is health care expenditure lower for people with positive health?
  • Is there better mental health and less mental illness?
  • Do people in positive health not only live longer but have more years in good health?
  • Do people in positive health have a better prognosis when illness finally strikes?
So the definition of positive health is the group of subjective, biological, and functional assets that actually increase health and illness targets.”


Several of the schemes I am looking at involve a component of mentoring, and I see it as a very valuable tool for any health information and support service. A good mentor can provide real hope to patients and create a two-way equal relationship, and is an excellent way to tap into and use the lived experience of others.

The Mentoring + Befriending Foundation have toolkits, training and good resources to help schemes become established and run effectively. 

Wednesday, 14 March 2012

Prescription to Thrive

An American base organisation looking at wellbeing in the context of HR and in the workplace. It all applies to life outside of the workplace too.

Expert Patient Service User Mentor

The EPPCIC has a really interesting project on the go at the moment; using the experience of expert patients to introduce health & social care students early on in their careers to the reality of living with and managing long-term conditions.

Increasing awareness of the reality of these conditions is important, and when better to install this than during the first years of their professional lives?! Having the information delivered in a personal way through mentors should make the learning process two-way and interactive.

What a great model - it can applied to lots of awareness schemes I think!

Tuesday, 13 March 2012

Glass half full really is better!

Another interesting study that I have come across on my Open University course; the benefits of positive thinking!

A study by Maruta et al. (2002) reports that pessimists have a lower quality of life and below average physical and mental health. Your 'explanatory style' has a significant effect on your health.

"Wellness of being is not just physical but attitudinal. How you perceive what goes on around you and how you interpret it may have an impact on your longevity, and it could affect the quality of your later years."

The power of control

 Even people adament that they are not control freaks can benefit from having control over their lives. In 1976, Ellen Langer and Judy Rodin did a study on the effects of residents in a care home having control over their lives. The group that were given choices such as to rearrange furniture, care for a plant, and to decide what night to watch a film were more alert, active and reported a higher sense of wellbeing (physical and mental) than the control group that were not given such control. The big impact was on mortality; 18 months later, twice as many people in the control group had died.
The concept of "learned helplessness" that is so well documented in other mammels has been seen in humans too.The absence of hope does shorten lives!
Sadly, Langer has since reported that little has changed in carehomes since she published the study. The mentality of CURE rather than CARE has caused society to overlook these simple interventions.

Listen to the full BBC Radio 4 programme here.

Monday, 12 March 2012

BMA Self-Management

The BMA have a page dedicated to their efforts on training GPs in supporting patients to self-manage their own long-term condition (see here). It has some great ideas, and identified the needs of these patients . . . . . but I can't see what is being activly done to raise the awareness of these ideas/needs with a GP?!

The joint PLG and GPC paper recommended that “Every person diagnosed with a long term condition should know how to gain information on their condition and how to develop their self management skills through education available from the NHS and voluntary and community sector organisations. Every patient should also know who, as well as their GP, may be able to give advice and support.” 

In order to better self manage their health, patients need be able to:
  • get information about their medicines and advice about taking them
  • understand their test results and what they mean for the management of their condition
  • find sources of reliable and up to date health information to meet their specific needs
  • find out about national and local support groups and organisations
  • know about generic or condition-specific education programmes that could help them self manage better
  • gain access, where appropriate, to technologies to assist them in self monitoring and self medicating.

The value of Peer-to-peer support

Mike Slade in The guardian has just written a really positive article about the value of peer-to-peer support for patients with mental health conditions. I think it can be a really effective tool for patients with any health problem; mental or physical. They provide "an expectation that a life worth living is available", but can also be honest about the process of finding that in a way someone not having had lived experience would find difficult to convey. The journey will be good and bad - they can portray that, but still leave hope.

Read it here

Thursday, 8 March 2012

Patients Association: "GP Duty to Refer"

The Patients Association is an organisation to collectively campaign for and support patients through the most common experiences felt across any condition. They have a really interesting pledge in their manifesto, "GP Duty to Refer",which focuses on getting healthcare professionals to signpost patients to relevant charities and support groups and sources of information.
Apparently only 2% of members of the Meningitis Trust were signposted there by doctors!
These invaluable resources need to be used, and awareness needs to be increased! The NHS can not 'commission volunterring' without letting people know about the vital services they are relying on!
Read the full details here:

Wednesday, 7 March 2012

An Eco NHS?!

The NHS has often been described as 'unsustainable' but it is very rarely meant in the environmental way. But the concept of recycling is slowly being considered . . . with old medications. I certainly have a collection of odd packets from drugs I no longer take, and this article on the BBC suggests I am not alone! Recycling these spare drugs would save money and potentially energy too! I understand the safety concerns, but I would hope they could be overcome!

Read the full article here:

Further to my previous post: Radio 4 HealthCheck: Web information

Expanding on my previous blog about the level of literacy needed to accurately take on board medical information online, the BBC have written an article about the effect of poor literacy on patients when taking medications. As Dr Barry Parker discusses, having health information is important to promote public health and increase awareness, but the disproportionate amount of this information that is presented in the written form could be really difficult for a subset of patients. The fear is also that the abundance of online information is replacing the face-to-face explanations given by consultants of the medical condition.

Very thought-provoking and interesting arguments!

Read the full article:

Neurological Alliance fighting a worthy cause!

The Neurological Alliance looks after the interests of patients with neurological conditions, and campaigns on their behalf. One of the problems that they have identified with the Health and Social Care Bill that Parliament has proposed is the lack of care for patients with rare conditions. Neurology as a speciality is very diverse and challenging and includes more than its fair share of rare diseases, as well as the most common strokes and dementia. They suggest that the new local commissioning style will make provision for these rare conditions not cost-effective, and therefore not provided. No decision the NHS has to make is going to be easy, but one would hope that cost-effectiveness is not given absolute priority in all cases. Although rare by definition, the number of patients that suffer from all the rare diseases is actually quite considerable, 1 in 17 people, and that many patients can not be left on the dark. If the commissioners say 'no' to providing adequate services for rare diseases, they are not treating a very large number of patients, 3.5 million patients in the UK!  
"Collectively rare diseases are not rare"
See Rare Disease UK for the stats on patients affected by rare diseases
See Neurological Alliance PR

Monday, 5 March 2012

Email and Text coming to the rescue for delivering effective care to patients?

When you are tired and depressed and anxious, would seeing a real person in the flesh and talking through the problems be a more obvious choice than using the cold and impersonal electronic communication channels at our finger tips?

Two recent stories have talked about the effective trials of psychological services being delivered via text or email - with amazing results! Radio 4's You and Yours, were discussing the new App called 'Buddy' that texts patients questions relating to their mood and generating a continuous picture of their psychological condition. Listen to the show here, and read more about the app here. The BBC Health website has recently reported on some Dutch research into the effectiveness of email-based psychological therapies in young patients with Chronic Fatigue Syndrome. Read the full article here.

Nothing should substitute the face-to-face consolations with healthcare professionals, but these additional communication channels could provide (like the telehealth systems) valuable information that makes the face-to-face consultations more useful. And the results are certainly impressive!