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.

Wikipedia

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

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!

Source: e-patients.net

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: http://gmj.gallup.com/content/143258/patient-experience.aspx

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.
http://www.bbc.co.uk/news/health-17381926

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.”

Mentoring

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. 

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.
http://www.prescriptiontothrive.com