Privacy: Open Data, Individual and Group

The vertical axis of Hodges' model is the individual - group, or self through to collective. Health and social care constantly negotiates this from the ideals and delivery of person-centred care to public mental health. So often for health professionals the emphasis is on the individual, the person's care needs, their strengths, their rights, outcomes and feedback on care received. The same individual focus is also ascribed to records and information. Protection of data, maintaining confidentiality is an essential duty of health care  professionals.  

Earlier this year the government's care.data scheme was placed on hold. 'Open' is the way of the world: open access, open source, open data and open government. Increasingly the group as an entity needs to considered in what may be a new way, as Floridi writes:

The idea that groups may have a right to privacy is not new, and it is open to debate, but it has not yet received all the attention it deserves, although it is becoming increasingly important.

 ...

Open data is more likely to treat types (of customers, users, citizens, demographics population, etc.) rather than tokens (you, Alice, me), and hence groups rather than individuals. But re-identifiable groups are ipso facto targetable groups.It is therefore a very dangerous fallacy to think that, if we protect personal data that identify individuals, the protection of the groups will take care of itself. p.23.

Luciano Floridi. Group Privacy. The Philosophers' Magazine. Issue 65, 2nd Quarter 2014. Pages 22-23.

Here is a related book (on my list) a BMJ award winner:

The Private Life, Josh Cohen

The war over private life spreads inexorably. Some seek to expose, invade and steal it, others to protect, conceal and withhold it. Either way, the assumption is that privacy is a possession to be won or lost.

But what if what we call private life is the one element in us that we can't possess? Could it be that we're so intent on taking hold of the privacy of others, or keeping hold of our own only because we're powerless to do either? ...

In political hands person-centred care is a quantum phenomena (entanglement)

individual
INTERPERSONAL : SCIENCES

humanistic ------------------------------------------- mechanistic

SOCIOLOGY : POLITICAL

group

Acute mental health needs RISK Self-harm Local care? Empowering the individual? Accessibility Cognitive distance Let therapy commence Continuity (dist-ress) Remote policy touch Organisational (distance) dementia? threshold   ↘	RISK  Self-neglect personal hygiene domestic environment local-regional-national?  metrics: Km or Miles or time? Gallons or Litres? Cost? Illusory savings? threshold ↓
RISK   Harm to others to integrated care  multidisciplinary care      threshold →	Beds

Lintern, S. (2014) Mental health patients sent hundreds of miles for a bed, HSJ, 14 August.

Beds shortage = Gathered Sobs
Mental Health = Lethal Anthem?
Mental health = Lean Halt Them

Bed image:
By kieran jones (http://www.clker.com/clipart-bed-icon.html) [Public domain], via Wikimedia Commons

World Health Day 2014

Vector-borne disease

Social Science Research Questions & Methodological Challenges in the 21st Century

ICOSS, University of Sheffield
219 Portobello, Sheffield, S1 4DP

www.shef.ac.uk/icoss

This seminar series will explore some of the key methodological challenges that the social sciences face in addressing research priorities in the 21st Century. Some of these areas involve continuity in topic and approach, whereas others involve new characteristics and aspects of social life.

The seminars will involve researchers discussing the kinds of research questions they are beginning to ask and looking at the methodological approaches and challenges that these questions pose. We will explore this in four seminars that relate to contemporary social issues, covering:

• Wellbeing and disadvantage
• Diversity and community
• Vulnerabilities and risks
• The relationship between social and digital worlds.

Following these four seminars, there will be a roundtable event, where there will be broad discussion about the methodological challenges and how the research community might address these.


Read more about the seminars.

Seminar dates:
• Tuesday 20 May 2014
• Monday 30 June 2014
• Wednesday 16 July 2014
• Wednesday 15 October 2014

Final roundtable event:
• Wednesday 26 November 2014

How to participate:
There are a number of ways in which you can participate in the series and join the conversation:
* All submissions will be subject to peer review.

1. Submit an abstract to present a 20-minute paper at one of the four seminars
We welcome abstracts for papers related to one of the 4 seminar themes. Based on ESRC priority areas, these themes are purposefully broad and papers may be based on work in progress, methodological or empirical issues you are currently grappling with as well as thoughts on future research potential and papers relating to completed projects. We welcome paper presentations from researchers of all career stages.

If you would like to present a paper please submit a title and abstract of no more than 250 words by completing the online abstract submission form(link)/by emailing your abstract to http://methodologicalchallenges.group.shef.ac.uk/ (please indicate which seminar you would like to present at and state whether you will be presenting in person or via weblink) three abstracts will be selected for each seminar.
The deadline for abstracts is 14^th April 2014.

2. Submit a written ‘think piece’ for dissemination on the seminar series’ website
We invite 400 word peer reviewed ‘think pieces’ for dissemination on the website. These could include (but are not limited to): reflections upon a particular research issue, experience or dilemma; thoughts or opinions on a particular issue affecting today’s research community; an annotated extract from your data or field diary. Think pieces may or may not relate to the themes of the seminars. Think pieces can be emailed to http://methodologicalchallenges.group.shef.ac.uk/ for peer review from 14^th April. Think pieces will be accepted throughout the duration of the series.

3. Submit a poster to be displayed on the accompanying website
We invite posters for dissemination on the website. Posters should be in PDF format… and could be based on a particular project, method, idea or experience. Posters may or may not relate to the themes of the 4 seminars. If you would like to submit a poster please submit an expression of interest using the abstract submission form http://methodologicalchallenges.group.shef.ac.uk/. Posters will be accepted throughout the duration of the series.

4. Attend a seminar and/or the roundtable event either in person or virtually
You are very welcome to attend the seminars and round table event and join in the discussion. You can do this in person by coming along to an event here in Sheffield or by joining us via web link. However you wish to attend, please register first by contacting Jayne Parkin, j.e.parkin AT sheffield.ac.uk.

If you wish to attend the seminar series in person, you can find directions to ICOSS here. If you would prefer to participate virtually, join us here at http://methodologicalchallenges.group.shef.ac.uk/ and submit your questions via Twitter, using the hashtag: #socmethods. You can also follow us at: @SocMethods

* This seminar series is funded by The Faculty of Social Sciences at the University of Sheffield, with additional support and guidance from NatCen Learning.
* Seminar series organiser: Dr Bridgette Wessels.

Best wishes,

Jenny Smith
Marketing Officer
Department of Politics / Department of Sociological Studies
The University of Sheffield
Elmfield, Northumberland Road
Sheffield, S10 2TU.

HCA training: Knock, knock, knocking on the political domain's door

INTERPERSONAL : SCIENCES
humanistic ------------------------------------------- mechanistic
SOCIOLOGY : POLITICAL

individual

emotional care	physical care
social care	FRANCIS - a year on:  How much training do healthcare assistants have before their first shift on a ward? 25% = none

group - population

Although that 25% sits nicely in the POLITICAL domain, what is the impact of this finding across the domains overall? Whether or not the impact is equally shared across the interpersonal, sciences and social domain, upon which domain will it end up knocking?

Calkin, S. (2014) Francis impacts on culture and patient safety, HSJ, 7 February. 124, 6376, 4-5.

TEDMED Great Challenges Google+ Hangout: Unraveling Dementia 31st Oct

Unraveling Dementia: The Race to Find Answers

Thursday, October 31st, 2PM EDT

Recent advances in research are describing more of what we need to know to prevent or treat Alzheimer's and dementia. Projects like the BRAIN Initiative, described at TEDMED 2013 by Dr. Rafael Yuste, and new medication discoveries, drive our opportunities to best understand dementia and imagine a future without it. Join our online conversation to talk about the latest breakthroughs in dementia, including research that has identified early lifestyle changes you can make to reduce your risk. 

 

Tweet questions and comments to #GreatChallenges and we’ll address them on air.  Join Us!

http://tedmed.com/greatchallenges?ref=live-events

Study on attitudes to epistemic uncertainty in safety - Call for participants

From: Eugenio Alberdi, e.alberdi AT CSR.CITY.AC.UK
To: SOCIOTECH AT JISCMAIL.AC.UK
Sent: Tuesday, 17 September 2013, 19:57
Subject: Study on attitudes to epistemic uncertainty in safety - Call for participants

The Centre of Software Reliability and the Department of Psychology at City University London are running a study on reactions to epistemic uncertainty in decision problems about safety.

Perceived errors in such decisions are often debated hotly after the fact, but there is still a need to study how the input to the decision maker can help or hinder correct decisions.

If you are involved in any capacity with probabilistic reasoning about safety and risk, we would be grateful if you take the survey at:

http://www.csr.city.ac.uk/people/eugenio/probabilities_survey.html

This study arises from research project UnCoDe -
(UNcertainty and COnfidence in safety arguments: effect on expert DEcision makers):

http://www.city.ac.uk/informatics/school-organisation/centre-for-software-reliability/research/research-projects/uncode

All participants will have the opportunity to read the final report from the study and the other project outputs.

Regards,

_eugenio

Dr. Eugenio Alberdi

Research Fellow, Centre for Software Reliability,

City University, London, Northampton Square, London EC1V 0HB

Email: e.alberdi AT city.ac.uk

Tel: +44 (0)20 7040 8424  Fax: +44 (0)20 7040 8585

http://www.city.ac.uk/informatics/school-organisation/centre-for-software-reliability/staff/dr-eugenio-alberdi

Conceptual Reflections on Schizophrenia - Hodges' model

A decade ago I was studying the Psychosocial Interventions for Psychosis (COPE) pathway part-time at Manchester University. The student body was interprofessinal made up of nurses, psychologists, occupational therapists, nurses and if memory serves me right people from the voluntary (third) sector. What I learned then left me wondering where I had been all those years since qualifying (lost in IT....).

There are many universities now delivering this curriculum, presenting the very latest research. The lecturers are frequently the researchers themselves, working in ongoing multicenter trials studying  various aspects of the treatment and care management of psychosis.

This is why it is very alarming to hear of the lack of progress not just within in-patient care as per the findings of the Schizophrenia Commission, but the delivery of care for these individuals and their families across the health and social care system. Of course, as a former student and holder of a PG(Dip.) I am not at present practising these skills formally.

In the h2cm table that follows I have highlighted some of the main concepts across the care domains of Hodges' model:

INTERPERSONAL : SCIENCES

SOCIOLOGY : POLITICAL

beliefs, perception, attention, anxiety, stress, vulnerability, pleasure, feedback, motivation, mood, therapies, therapeutic relationship, communication, assets, cognitive triad, perception, delusions, hallucinations, positive and negative symptoms, person-centered care, existing coping strategies, mental health assessment, literacies (3Rs, emotional, health), salience, attention, attribution, meaning, creativity

physical health, weight, fitness, side effects, medication, atypical antipsychotics, evidence, genetics, research, diagnosis, (cognitive) information processing, dual diagnosis, risk, models of care, recovery, hierarchy of clinical evidence, care processes - assessment, care planning, access to interventions, audio recording of sessions, protocols, DSM IV

clinical supervision, social attitudes - family, friends, community, stigma, myth, media, carers, familes, social relationships, network, self help groups, survivors, www.hearing-voices.org/ activities, daily routine, 'value' of a diagnosis - pros & cons (discuss), community centers, clinical supervision, positive risk management, employment, social history of mental health, social psychiatry, stories,education - schools & community, 'community care', housing

mental health history, institutional vs. community care, mental health law, autonomy, consent, capacity, best interests, equity mental health services, early intervention, access, POLICY, antipsychiatry, equity, governance, data gathering, statistics, reporting, outcomes, services, secure provision, early intervention, crisis intervention, DSM V, commissioning, funding for mental health, education and training, sickness - welfare benefits - 'incapacity' review 'return to work'

The relative position of concepts above does not indicate priority.

Schizophrenia Commission - Recommendations

100 years since Eugen Bleuler coined the term, schizophrenia remains a stigmatised and misunderstood illness. Today a report is published on one of the largest ever reviews of the condition in England. We’d like to tell you about it - and how sharing a picture with your friends can help spread the message…

An independent inquiry

In November last year, Rethink Mental Illness launched the Schizophrenia Commission. Chaired by Professor Sir Robin Murray, this expert panel heard evidence from people with schizophrenia and psychosis, families, professionals, leaders of NHS and social services, academics, policy makers and journalists. Recommendations arising from their inquiry, released today, call for a radical overhaul of the current system of care.

The message that comes through loud and clear is that people are being badly let down by the system in every area of their lives    Robin Murray – Commission Chair
 
The commission found that

• Only 10% of people with schizophrenia are being offered potentially life-transforming talking therapies such as CBT
• Mental health hospital wards are often such appalling places they make patients worse rather than better
• 1 in 3 people affected say they can't get quick access to services when they need it - and many don't know where to go for help
• Major concerns remain about the lack of efficacy and side effects of anti-psychotic drugs, which can lead to rapid weight gain, diabetes, and heart disease

We need more people to understand the realities of living with schizophrenia. Share our infographic today so the public know more about what the illness is - and isn’t.

The messageThe report suggests priority actions that directly affect services for people with schizophrenia. Key recommendations include:

• A complete overhaul of inpatient units including more widespread use of community based “recovery houses”
• A redirection of funding from secure units into early intervention services, which save the taxpayer money and prevent people reaching crisis point
• More research on the causes and treatment of schizophrenia and psychosis including the development of better drugs with fewer side effects
• The elimination of poor prescribing by psychiatrists and the right to a second opinion on medication for patients
• Extending access to psychological therapies and assertive physical health interventions
• A stronger focus on prevention, including clear warnings about the risks of cannabis
• Greater partnership with people with psychosis - valuing their experiences and making their preferences and goals central to their recovery
• Action to meet the needs of all marginalised groups, especially those from African and Caribbean communities
• A better deal for long-term carers who should be treated as partners, not problems

Read the commission’s report and their full 42 recommendations
See what commissioners themselves say about the recommendations and clinical practice by reading their blogs.

You can help
Do you want more people to understand what schizophrenia is? Help combat the myths surrounding the illness. Please share our infographic on Facebook and Twitter.

Thanks in advance for your support.
Rethink Mental Illness

My source: Pam Pinder c/o
http://www.jiscmail.ac.uk/lists/psychiatric-nursing.html
and various media twitter and BBC Radio 4.

Do check the infographic link in the above text.
The next post will provide a conceptual reflection on the above using Hodges' model.