Call for focus group participants: the records of adopted and care-experienced people -

– additional retention guidance for
record-keepers and care professionals

Could you help update retention guidance for record-keepers and care professionals by joining a focus group in November?

Care-experienced and adopted people, archivists & records managers and social workers are invited to participate in an online focus group to shape updated and detailed improvements in retaining care-experienced and adopted people’s records in England and Wales. This has been identified as a critical need by many recent reports including IICSA.

We recently published Guidance on the Records of Adopted and Care-Experienced People (Feb 2024) which sets out best practice, to improve consistency across England and Wales. We are a participative and inclusionary project led by members of the Chief Archivists in Local Government Group (CALGG), independent consultants and academics and professionals working in the records management, data protection and access to records fields, in the charitable and local government sectors. Some of our project members are adopted or care-experienced people.

Focus groups will take place on

Weds 13 Nov 11am-12.30

Mon 18 Nov 2-3.30pm

Thurs 28 Nov 2-3.30pm.

We will meet on Zoom: you will be able to join in your web browser, no zoom account or desktop app/licence is required.

Further information

The Guidance is aimed at people responsible for creating, managing, and providing access to care and adoption records. It includes the viewpoints of care-experienced people and adopted people to give practitioners a greater understanding of their experiences, needs and the challenges they face. The Guidance highlights that all organisations should have an up-to-date policy covering all records relating to children, young people and their families, together with procedures and plans to implement the policy including up-to-date retention schedules. Retention schedules recommend how long to keep different types of records. Each record type should have a retention period based on best practice, legislation, business need or a combination of these. Schedules also include how and when the retention period is triggered, and what should happen at the end of the period: typically either confidential destruction, or being kept permanently.

A retention period of [at] least 125 years from date of birth for case files and preferably 150 years as exemplary practice is recommended in the Guidance. However it also recommends the permanent preservation of these records with an option for people to opt out in the case of their own records.

These recommendations are made because many care-experienced or adopted people reconstruct their personal histories by turning to the records created about them by social workers and care providers. Thousands of requests to view records for this purpose are made each year in England and Wales. The records – a “paper self” - have significant impacts on a care-experienced person throughout their life. However, accessing records is often difficult, both practically and emotionally, and can be traumatic and dehumanizing. Records have been kept inconsistently across the public, private, and voluntary care sectors, affecting outcomes for individuals. Across England and Wales the records of adopted and care-experienced people who are formally classified as ‘looked-after people’ should be kept for 100 and 75 years respectively, but there are no permanent preservation protections for records in law. Moreover, some care-experienced people are omitted from the requirement for records to be retained. In addition, there are now many records sitting in digital systems which do not have a proper data migration/preservation strategy.

My Source: To view the list archives go to: https://www.jiscmail.ac.uk/cgi-bin/webadmin?A0=RECORDS-MANAGEMENT-UK 

The 'Health Career' - records and symmetry breaking: Admin vs Clinical needs?

In my nursing career to date and over the past 18 months I've been involved in some complex clinical cases involving profound physical, mental and social aspects of care.

Such complexity given the rise of long-term chronic medical conditions, multiple diagnoses and an ageing population is not uncommon. What is more remarkable is simultaneously reading on the records management and other informatics mail lists questions regarding the retention of specific types records within health care, social care, schools and the human resource departments of other organisational settings.

From the perspective of Hodges' model and the notion of a health career you wonder about the efficiency of administration - and legislation - versus the potential future utility of 'archived' clinical records. Clinical records from 20 years ago and less have frequently been destroyed and you are left to consider the possible relevance of that information to the care delivered in the here and now? This is particularly acute for reasons of the following:

• the increase in dementia and an individual's capacity to account for their past care;
• the increase in fractured family histories;
• the likelihood of significant past care episodes and medical events relevant to future episodes: 1) cancers; 2) psychological problems; 3) negative life experiences;
• the use of the medical record (health career) to inform someone's life story (and not just as a 'therapeutic intervention').

Is there an argument for a re-appraisal of retention schedules? Factors to consider might include:

• the shift to digital collection, storage, archiving and ever improving retrieval technologies;
• the use of semantic search - and intelligent (context - discipline-based) applications;
• the ability of the individual to decide on the longevity of their records;
• the advice of specific patient groups - Alzheimer's; Multiple Sclerosis; HIV / Aids...;
• the transition of an individual record to an item of historical interest;
• the ongoing emphasis upon collaborative care, self-care and personal health records;
• Archiving - shift from paper-centric to inclusion of digital media?

What do you think?

Additional links:

DoH Records Management - Information Policy

DoH (2006) Records management: NHS code of practice

Personal Health Record

Personal Health Records: Part I - revisiting Kim and Johnson 2002

When I was at HC2004 or 2005 I was given a copy of the Medical Informatics Yearbook 2003 from the British Computer Society - Nursing Specialist Group stand. Within this volume of key papers for the year April 2001 - March 2002 I found the following:

Kim MI, Johnson KB. Personal Health Records: Evaluation of Functionality and Utility. Journal of the American Medical Informatics Association. 2002. Mar-Apr; 9(2):171-180. Selected for inclusion in the IMIA 2003 Yearbook of Medical Informatics. 

The paper identified candidate Personal Health Records [PHRs], then developed criteria examining the entry and display of data elements necessary for the PHRs to serve as adequate representations of information. Then in the final third phase a selected group of PHRs were assessed for their functionality and utility (p.370). Of the 12 PHRs assessed I thought it would be interesting to check  their current status (this was a quick visit to the published domains).

Several Personal Health Records 2002 - 2012

Web Site	Record	URL	Findings
Dr. I-Net	My Medical Record	www.drinet.com/	A good start! Still operational domain redirects from original www.aboutmyhealth.com Continues to offer a PHR.
HealthCompass:	Lifelong Health Record	www.healthcompassnet.com	While there are several site using 'Health Compass' the original version was not obvious.
MedicalEdge	Medical Register	www.medicaledge.com/	Domain currently offers support to physicians, so a PHR may be part of a package?
MedicalRecord.com	Your Medical Record	www.medicalrecord.com	This now appears to be a directory to electronic medical records.
MedicData	MedicData	www.medicdata.com/	This does not appear to offer a PHR and the homepage is 'under construction'. It looks like the domain may have a new owner.
Medscape AboutMyHealth	Personal Health Record	www.aboutmyhealth.com/	Now leads to GE Healthcare.
myhealthnotes.com	Personal Health Manager	www.myhealthnotes.com/	Server not found.
PersonalMD	My Medical Records	www.personalmd.com	Retired - leads to: www.eheandme.com/personalmd_announcement.html
TheDailyApple	Health Records	www.thedailyapple.com/	Social networking is vital to well-being but no PHR here.
VistaLink	Health Profile	vistalink.com	Domain for sale.
WebMD	WebMD	www.webmd.com/	Very much alive and kicking commercially, but my health record / PHR not in immediately in evidence.
Wellmed.com	Health Record	www.wellmed.com	This site leads to http://www.webmdhealthservices.com/

Kim and Johnson provide several lessons as a high quality contribution to the medical informatics literature. From the above we see that while we talk about timeliness in terms of the written record, time takes on a series of new meanings when it comes to electronic records, media, commercial companies and clearly the internet.

As I read the paper and reflected on the past decade other things fell into focus. At the end of the day a PHR should be what it says - personal. Reading Kim and Johnson this did not stop them looking at the PHRs from the perspective of doctors and informatics practitioners. There is nothing wrong with this. Although developers and political masters quite rightly seek to engage with the user, espouse usability and user testing - a system is aimed at a community.

If title [personal] follows function [record] and form [electronic] follows function then what do we have?

Don't worry if you're lost, me too (I'm musing again); let's add the fog....

It's crucial to know what's going on over the fence (similarly sometimes it helps to climb a tree). In this case the person in the form of patient is not the only consumer of the information in the record.

This is the point: systems are about a user AND a stakeholder community. Stakeholder is a much maligned word, found on the lips of those seeking to reach and engage remote ('difficult' to reach) community groups. It has a definite role here though.

Every health discipline has its record, that is a professional must. So in effect you have a series of 'X' -HRs. On paper they were - and remain in many cases - a mess. What we should have then is a hybrid health record that depending on the user morphs itself accordingly. But what is the point in pointing to users and stakeholders? Well, conceptually how far is personal from medical (nursing...) and how far again to personality? Add to the mix the question of where patient, well-being and health fit in to the management of long term medical conditions as per the critieria of Kim and Johnson, accurate entry of medicines, medical conditions, lab tests, monitoring ... and you see what is frequently a record breaking task.

This is (or was*) the challenge: to transform something that is generically personal (with the potential contradiction this implies) to something that is personalised as in 'I'.

*Part II to follow.

Call for Papers - Dismantling Systemic Racism in Archives and Record-Keeping Practices, Archives and Records Special Issue

Archives and Records

Call for Papers
Dismantling Systemic Racism in Archives and Record-keeping Practices
Archives and Records Special Issue, 42:3 (November 2021)

Editors: Norma Gregory, Victoria Hoyle, Sarah-Joy Maddeaux

The social, economic and personal impacts of systemic racism are traumatic and profound.  The protests seen around the world in the wake of the murder of George Floyd in Minneapolis on 25 May 2020 reflect the deep and persistent effects of racial inequity in global society. They have again highlighted the roots of injustice in political, social and cultural systems of oppression, which activist movements like Black Lives Matter have sought to dismantle.

It has long been recognised that archives, archival institutions and record-keepers are implicated in how racism operates and reproduces in society.  Verne Harris and Michelle Caswell have described archives’ relation to dominant systems of power, whilst Jarrett Drake, Tonia Sutherland and Jamila Ghaddar have called for recognition of the inherently racist, oppressive and discriminatory nature of many archival institutions and record-keeping practices. In the UK, Black Archives and archivists of colour have persistently drawn attention to the ongoing impacts of racism and colonialism. A 2020 UK petition asking practitioners to commit to dismantling systemic racism received 1708 signatures on Change.org, articulating collective and individual responsibilities to effect change in the profession.

Nevertheless, discussions of systemic racism, white privilege, white supremacy, justice and equity continue to be controversial in the record-keeping field. Wide-ranging implications arise from questions such as:

• How have archives and archival institutions contributed to the systemic oppression of people of colour?
• How is archival theory and practice challenged by Black Lives Matter and other protest and justice movements?
• What role do record-keeping practitioners and educators play in perpetuating or dismantling systemic racism?
• What kinds of action and labour are required to dismantle systemic racism and to reconstruct an equitable and just archives and records field?
• To what extent do white privilege and white supremacy impact on archival spaces and understandings of what archives are and do?
• Are models and frameworks for reparation, restitution and justice transferable and valuable for archives?
• Are calls to ‘diversify the profession’ and ‘decolonise the archive’ sufficient impetus to change? How successful have such programmes been?
• What is the relationship between archival institutions and archival activism led by Black and Indigenous people, and people of colour?
• How is digital technology and social media impacting on documenting anti-racist action, protest and organisation? Is this documentation making its way into permanent archival collections available for public reference?
• How has television and radio programming (for example, BBC2 ‘The Unwanted: The Secret Windrush Files’ by David Olusoga) illuminated the nature, practice and concerns around the presentation (or inaccessibility/disposal) of colonial archive records?
• To what extent should legal or professional frameworks around record-keeping practice be reviewed?

This special issue of Archives and Records seeks to explore and respond to the challenge of racism and systemic oppression in record-keeping contexts. It aims to provide space to explore questions of race in discourse, practice and professional identity; at national, institutional, local and personal levels. It hopes to engender both reflection and action, and to amplify the voices and experiences of Black and Indigenous people and people of colour.  It will have a particular focus on the UK and Ireland, where discussions of racism in archives have thus far been limited, but invites international perspectives on Britain’s colonial legacy and on Anglophone ideas of archives and race.

The editors invite papers on any aspect of racism and anti-racism in the archive. Contributions might consider, but need not be confined to, the following themes:

• Histories of racism and anti-racism in record-keeping
• Decolonising the archive
• The intersection of critical race studies and archival theory
• Archival activism and community archives led by people of colour
• Collecting and curating protest and activist movements for racial justice
• Frameworks and models for dismantling systemic racism in the record-keeping field
• Reparation, restitution and transitional justice
• Intersections of race, gender, sexuality and class.

Expressions of interest should be made to victoria.hoyle AT york.ac.uk by 30 September 2020.

We particularly welcome submissions from people of colour, and those from marginalised communities.

Expressions of interest should be approximately 500-1000 words and contain a brief outline of the proposed article. The editors invite prospective authors to contact them to discuss their ideas informally before the deadline. The editors will also work with prospective authors who do not have experience of writing academic articles to prepare a paper for publication. We will contact all contributors to discuss their proposal by the end of October 2020.

The deadline for draft papers, for authors who would like editorial feedback prior to final submission, will be 28 February 2020. Completed papers will be due by 2 April 2021. All submissions will be double-blind peer reviewed prior to acceptance for publication, and both authors and reviewers will remain anonymous throughout the process.

We anticipate the special issue will be published in November 2021, in both online and print formats.

We are also looking for volunteers to review books or online resources on related topics. Please contact helen_kavanagh AT outlook.com, Deputy Reviews and Obituaries Editor, if you would like to contribute in this way.

--
Sarah-Joy Maddeaux

Co-Editor, Archives and Records

sjmaddeaux AT gmail.com

My source:
records-management-uk AT jiscmail.ac.uk

Mon, 27 Jul at 14:10

Top 5 worst EMR myths: c/o Healthcare IT News

I came across this post by Molly Merrill, Associate Editor and thought I could add some comments.

I'm usually wary of posts of the list of ... and top 5, top 10 variety. You see much of social media is cordial - not the concentrate form - but the dilute as observed in many of the comments. Anyway ....

You can read the original full text for each of the five on Healthcare IT News, here are some additional thoughts:

1. EMRs are bad for “bedside manner".

They can be BAD it all depends on usability, engagement, attitude, requirement, the overall environment and the extent to which the EMR is considered in all its socio-technical glory. Whatever the research does show item #2 admits the qualitative differences that exist in the marketplace - some EMRs are easier-to-use. If we expand the engagement beyond the professionals then the bedside equation demands the patient is factored in.

With the right care philosophy and conceptual framework (#h2cm?) e-health records of all varieties (EHR, PHR, EMR, Summary ....) can also support a positive, person centered bedside manner - transforming it to one that chomps at the bit ;-) to become a community based manner.

2. You can't teach old doctors new tricks.

Continuing professional development (or its equivalent) dictates that older doctors and other senior members of the multidisciplinary health and social care team can (should and must!) learn new tricks right up to retirement. Lifelong learning applies to all.

3. Only hospitals use EMRs.

I've little experience here working in the community (and in mental health), but judging from the applications and the infrastructure that an older EMR may demand, I suspect that they are indeed hospital (organisational) centered. That clearly is changing as mobile, mhealth applications mature to meet the rigorous demands of this market.

4. Having my data stored in an EMR is a security risk.

The security of electronic records cannot be assured. Data on devices that is not encrypted - is an open door, especially when those devices are portable. (If the use of encryption leads to complacency then I am uneasy.) Disciplinary measures may follow, but they are not a remedy. The human link in the chain aside - electronic records can be security assured to international standards. Far better than paper records and the photographs (anybody?) of paper hospital files sitting at the side of a corridor and other horror stories.


(Former link: The New York Times, 21 August 2011, New Data Spill Shows Risk of Online Health Records)


5. EMRs are expensive.

There are beholders, stakeholders, budget holders and tax payers. Despite the need for research findings I like the reflection of reality in item 5 that presages new players using new architectures and approaches. I've always felt that standards are essential and yet how do they relate to the scope for innovations? What is the relationship and how does that impact the market and in turn costs?

I've come across an item in .Net magazine that relates to EMRs - indeed all health informatics - I'll post on this while in London and attending Drupalcon.

Image source:
http://www.computerweekly.com/blogs/cwdn/2010/08/carry-on-doctor-your-electronic-patient-records-are-secure.html

Records I: Idealism, Comprehensiveness and who's that behind the tree?

[Opening thoughts: Even in the 21st C. idealism peppers more than philosophy; influencing education, professionalism (in all fields) and much more. The comprehensive ideal is not just the preserve of education; it is spread widely...]

Where does idealism lie in records?

If you are a health or social care student reading this, then (hopefully) a good dose of idealism (plus your bursary and future prospects!) drives you on. This idealism, transformed into motivation, helps to ensure that your written efforts - both course work and clinical notes - are worthy of earning the ticks-in-boxes and your mentor's signature. These in turn reflect your aspirations as a professional and all that entails.

Your clinical records and theoretical accounts of care (assignments, case studies...) must also play the role of a bridge facilitating travel between practice and theory. Your idealism makes you a runner, an athlete of the gaps. As a student you are still learning how to navigate the QUAD. What is this 'space'? What corners can you cut? No, first let's cover the corners that must remain forever 90 degrees! As a student - and a lifelong learner - you help question existing practice.

As soon as we first pick up those crayons we realise that comprehensiveness is readily applied as a measure for many processes in which '100%' becomes or is associated with the ideal. The usual association calls upon comprehensiveness as a property of information - as are validity, accuracy, timeliness and others. Records and information do not sit still. They are full of energy. True, when the archivist gets hold of them that energy may be potential rather than kinetic, but in use they are multicontextual and travel takes time. Perhaps, this is how - as our records (and information) travel hither and thither - comprehensiveness sticks out its big foot and trips the unwary traveller. As all learners negotiate the QUAD, they need guidance, support and protection. The QUAD really is a learner's paradise, but there are dangers out there amongst the sun-dappled trees....

Keep your (socio-technical) eyes open, because sometimes when you least expect it comprehensiveness teams up with idealism AND policy to create conceptual (if not practical) mayhem. Tree of knowledge - yes sure - but keep an eye on the fauna.
More to follow...

(Confidential) Letter to self - and you, and you, and you... ?

Hi PJ,

I'm wondering if you can help with something that's been troubling me a bit...?

You know that as a nurse (and future patient!) confidentiality (which increasingly relies on the security of ICT systems) is of course vital to your profession and professionalism both in theory and practice. Quite rightly take this for granted and you could be in serious trouble, with your job in jeopardy.

I’ve been wondering about the way that Jo-public views their personal health information and clinical record and how these views have evolved over the past decade and how they will change in the next 5, 10 .... years? A change that will have major implications for definitions and the meanings of record, access, sharing, personalised, and professional. This is also one of those slippery slopes; since it will be very difficult to get that emerging genie back in the bottle. The clinical record even with new consent models will increasingly make it a currency for exchange within a *wider* community given the rise of electronic and personal health records, Health 2.0, 3.0…. By 'community' I mean one not just restricted to health and social care organizations, but one that could be much more extensive.

There are a lot of tools out there in the public domain that enable the creation of new portals, services to which other agencies can add value. This is not a problem: 'value-added services' is one definition of progress.

The problem is the pace of change and the extent.

Health has always been commodified. Recently on the news I heard that a kidney is probably worth 1.5 million dollars (https://www.newkerala.com).

Perhaps for the ‘professions’ given the sanctity of clinical records this is the ultimate trip?

Any thoughts or directions to references…?

Many thanks and best regards,

'Your other half'
P.S. People had better be careful when they mix personalised and professional - that's quite a potent concoction. I wonder if you can sell it?

Additional links / reading:

Viewpoint Paper
A Research Agenda for Personal Health Records (PHRs)
David C. Kaelber, Ashish K. Jha, Douglas Johnston, Blackford Middleton and David W. Bates
Journal of the American Medical Informatics Association, Volume 15, Issue 6, November-December 2008, Pages 729-736.
Abstract:

Patients, policymakers, providers, payers, employers, and others have increasing interest in using personal health records (PHRs) to improve healthcare costs, quality, and efficiency. While organizations now invest millions of dollars in PHRs, the best PHR architectures, value propositions, and descriptions are not universally agreed upon. Despite widespread interest and activity, little PHR research has been done to date, and targeted research investment in PHRs appears inadequate. The authors reviewed the existing PHR specific literature (100 articles) and divided the articles into seven categories, of which four in particular— evaluation of PHR functions, adoption and attitudes of healthcare providers and patients towards PHRs, PHR related privacy and security, and PHR architecture—present important research opportunities. We also briefly discuss other research related to PHRs, PHR research funding sources, and PHR business models. We believe that additional PHR research can increase the likelihood that future PHR system deployments will beneficially impact healthcare costs, quality, and efficiency.

From the above:

Markle Foundation http://www.markle.org

Robert Wood Johnson Foundation http://www.rwjf.org

Considering something ‘ELSE’: Ethical, legal and socio-economic factors in medical imaging and medical informaticsPenny Duquenoy, Carlisle George, Anthony Solomonides
Computer Methods and Programs in Biomedicine, Volume 92, Issue 3, December 2008, Pages 227-237.
Abstract:
The focus on the use of existing and new technologies to facilitate advances in medical imaging and medical informatics (MIMI) is often directed to the technical capabilities and possibilities that these technologies bring. The technologies, though, in acting as a mediating agent alter the dynamics and context of information delivery in subtle ways. While these changes bring benefits in more efficient information transfer and offer the potential of better healthcare, they also disrupt traditional processes and practices which have been formulated for a different setting. The governance processes that underpin core ethical principles, such as patient confidentiality and informed consent, may no longer be appropriate in a new technological context. Therefore, in addition to discussing new methodologies, techniques and applications, there is need for a discussion of ethical, legal and socio-economic (ELSE) issues surrounding the use and application of technologies in MIMI. Consideration of these issues is especially important for the area of medical informatics which after all exists to support patients, healthcare practitioners and inform science. This paper brings to light some important ethical, legal and socio-economic issues related to MIMI with the aim of furthering an interdisciplinary approach to the increasing use of Information and Communication Technologies (ICT) in healthcare.
 
Situation-Based Access Control: Privacy management via modeling of patient data access scenariosMor Peleg, Dizza Beimel, Dov Dori, Yaron Denekamp
Journal of Biomedical Informatics, Volume 41, Issue 6, December 2008, Pages 1028-1040.
Abstract:
Access control is a central problem in privacy management. A common practice in controlling access to sensitive data, such as electronic health records (EHRs), is Role-Based Access Control (RBAC). RBAC is limited as it does not account for the circumstances under which access to sensitive data is requested. Following a qualitative study that elicited access scenarios, we used Object-Process Methodology to structure the scenarios and conceive a Situation-Based Access Control (SitBAC) model. SitBAC is a conceptual model, which defines scenarios where patient’s data access is permitted or denied. The main concept underlying this model is the Situation Schema, which is a pattern consisting of the entities Data-Requestor, Patient, EHR, Access Task, Legal-Authorization, and Response, along with their properties and relations. The various data access scenarios are expressed via Situation Instances. While we focus on the medical domain, the model is generic and can be adapted to other domains.

Picker Inst. http://www.pickereurope.org/

Report: Personalised Health and Care 2020 [II] - National Information Board

individual
INTERPERSONAL : SCIENCES

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

SOCIOLOGY : POLITICAL

group

"All patient and care records digital, real time and interoperable by 2020."	"Clinicians in primary, urgent and emergency care, and other key transitions of care contexts will be operating without paper records by 2018."
"Patients have access to their hospital, community, mental health and social care services records by 2018."	"By April 2016, commissioners and providers must publish "road maps" showing how they will develop interoperable digital records and services by 2020."

Report: Personalised Health and Care 2020. National Information Board. November 2014.

Source:
Illman, J. (2014) National tech blueprint sets greater role for regulators - Personalised Health and Care 2020: selected recommendations, Health Service Journal, 21 November. 124: 6424; p.13.

Records Management Journal - Editor Opportunity

 All

After nine years in post, I am stepping away as a Co-Editor of the Records Management Journal. My colleague Sarah Demb has also recently completed her term. A double issue on recordkeeping and the law is about to land and we have a strong series of articles for next year. We are therefore advertising the opportunity for someone to take forward this important Journal which contributes in research and practice, and does publish content globally. The role of Editor provides a first hand opportunity to lead and network in this field, positioning special themed issues and ground breaking research. The work is supported by its strong Editorial Board.

The full advertisement is at:

https://www.emeraldgrouppublishing.com/journal/rmj/records-management-journal-rmj-searching-a-new-editor-chief-or-co-editors

I am very happy to answer any further enquiries.

Kind regards

Elizabeth

Dr Elizabeth Lomas, FRSA, FIRMS, FHEA, FRHisS

Associate Professor in Information Governance

G43, Foster Court

Department of Information Studies

University College London

Gower Street

London WC1E 6BT U.K.

Email: e.lomas AT ucl.ac.uk

My source: RECORDS-MANAGEMENT-UK list.

Information and Records Management Society [IRMS] Conference Bursaries

Dear list,

Apologies for the cross-posting. I am forwarding this on behalf of the Information and Records Management Society.

If you think you can’t afford to attend the IRMS Conference or that it’s not the place for someone like you, it could be time to think again! That’s because we’re offering FREE bursary places that will give 3 people from under-represented groups an all-inclusive ticket to IRMS24 in Brighton on 12-14 May.

But you’ll need to be quick – the deadline is less than 2 weeks away!

There are 3 categories of bursary available:

1. New Generation – open to anyone aged 30 or under at the start of the conference on 12 May 2024
2. Diversity and Inclusion – offered to an information professional or student from an ethnic minority background, or who has a disability (or both)
3. International – available to IRMS members based outside of the UK and Ireland

Each bursary provides 1 fully-funded place at the whole event, including all conference sessions, food and refreshments, evening social events, and two nights’ luxury B&B accommodation at the conference venue, the DoubleTree by Hilton Brighton Metropole hotel. Please note we are unable to cover any travel costs.

You must meet certain criteria to be eligible for a bursary. If you do, then to apply, all you have to do is tell us who you are, which bursary you are applying for and why, and how you will benefit from being at the IRMS Conference 2024 – including which speakers or topics you are most excited about! We also ask how you would share your experience at the event.

You haven’t got long - the deadline for applications is Sunday 10 March.
For full details and to apply, go to www.IRMSConference.org.uk/Bursaries.

And spread the word - we want these bursaries to be available to the widest possible audience, so please share with friends, colleagues and contacts.

Thank you, and good luck! Joe
Joe Chapman IRMS Conference Director

Best Regards,
Ren

Reynold Leming
Managing Director
reynold AT informu-solutions.com
https://www.informu-solutions.com/

My source: Records Management List - Archive
https://www.jiscmail.ac.uk/cgi-bin/webadmin?A0=RECORDS-MANAGEMENT-UK

Response to: Pros and cons of pulling behavioral and social data into EHRs [Government Health IT]

Mike Miliard Editor of Healthcare IT News posted an item:

Pros and cons of pulling behavioral and social data into EHRs

To put my reply in context here is the start of Mike's post:

Should more types of health data figure into electronic health records?

On the one hand, the Institute of Medicine put out a call for doing just that on the grounds that behavioral and social data can benefit population health practices to ultimately improve the care of individual patients. For physicians who already complain that EHRs are burdensome and distract from care delivery, on the other hand, the idea of making electronic records more complex, perhaps even cluttered, will inevitably be unwelcome news. ...

Talk about a work in progress? How long does it take to get this right? Of course health and social care data is always ongoing, as governments change, policy, medicine, local government, social care, technology and society too.

As Mike notes for many physicians the EHR is already burdensome. My context is quite different being nursing, mental health, and crisis-oriented in the community. I've defined small research-based datasets in the past and it is a fascinating pursuit. Trying to have the data defined and reporting ready before the 'door opens'. Doing this retrospectively is no fun at all.

At work when I visit someone in a residential care or nursing home, do I record this as 'home', or 'community' in the absence of the aforementioned categories? Is this ageism?

Is there a digital dividend to come to the physician's aid? Surely increasingly the physical measurements and observations in medicine, surgical... can be automatically captured, disseminated and presented accordingly? Surely, it is possible today to bring in other data as the context changes? If we can autofill on words, we should be able to auto-fill the dataset as context shifts? There are many algorithms out there already 'alive and countin-the-clickin'  in the milliseconds.

It seems Mr Miliard is writing about one way to define 'integrated care'?

It isn't just 'public health' though;
it must combine, be inclusive of - 'public mental health'.

The focus of the article is the Institute of Medicine's report:

Capturing Social and Behavioral Domains and Measures in Electronic Health Records: Phase 2

Mike lists eight domains from the report and these are mapped to Hodges' model below:

individual
INTERPERSONAL : SCIENCES

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

SOCIOLOGY : POLITICAL

group

educational attainment, stress, depression	physical activity, stress
social isolation, intimate partner violence (for women of reproductive age)	financial resource strain, neighborhood median household income

I've included stress twice as there are at least two forms: anxiety - internal; and environmental - external.

Google launches online personal health records project

Here is an item from Computer World by Heather Havenstein:

Google launches online personal health records project

Pilot to test exchange of patient data between its health offering and the Cleveland Clinic ....

My source: Records Management List.

AI Health 2025 Friday November 7th 2025

AI Health 2025

Friday November 7th 2025

At the BCS London Office
Ground Floor, 25 Copthall Avenue, London, EC2R 7BP (near Moorgate underground)

Organised by BCS-SGAI

BCS-SGAI, the British Computer Society Specialist Group on Artificial Intelligence was founded in June 1980. Its mission is: "To foster achievement, capability and awareness in both business and research in Artificial Intelligence, and to promote the interests of the related community". It is one of Europe's longest established groups working to support the community of artificial intelligence developers and users and is the organiser of one of the longest running annual series of AI conferences in Europe: the AI-20xx series.

In England, 189 out of 208 (91%) hospital trusts are using electronic health records (EHRs) bringing opportunities and challenges and for Artificial Intelligence (AI). In the morning, there will be a session about EHRs with speakers from UK (animal health records), France (European Health Data Space infrastructure for the use and exchange of EHRs), and Spain (personal health records). Before lunch break, there will be a brief 101 hands-on tutorial about Neuro-Symbolic AI with short exercises. In the afternoon, there will be a session about clinical decision support, exemplifying the use of AI-based healthcare technologies. Come along if you are interested in AI and its potential in healthcare.

There will be Certificates of Attendance for those who register and attend the event.

We hope that you will come and join us, and that you enjoy this new offering from the BCS SGAI.

Dr. Mercedes Arguello Casteleiro (BCS SGAI)*

https://www.bcs-sgai.org/health2025/

Please see link above for programme and speaker details.

*.. And my source - BCS SGAI.

Records 2: Flying the standard

'Records I' was posted last September, time to revisit this theme...

If I am a real champion of Hodges' model, convinced of the value and care-worthiness of this 21st century conceptual framework then why have I not been an agent of change@work?

Surely, I would not have stopped short of stepping on toes, or letting a lack of evidence get in the way of advocating the model as a solution to real problems? So why haven't I been the standard bearer where it really matters - on the shop floor? Excuses are many and include:

• the personal - part-time nature of my combined nursing-informatics interest;
• following local policy Care Programme Approach [CPA];
• professional accountability - risk assessment and management and working as a CPA lead;
• watching with interest as the Single Assessment Process joined the fray;
• and even more recently the Common Assessment Framework;
• plus, and this may be a cop out - I like people to decide/discover things for themselves.

Having been away from the clinical practice from Nov 2004 to last summer I was informed as to how much things had changed. After a short period of time I realised on the contrary how little things had changed.

We are still completing paper documentation designed for risk assessment, service engagement and case management of younger adults. Sometimes this focus and attention is justified with older adults, but this is rarely the case. Case files end up with pages of redundant white-space, white noise that slows what we might call conventional information retrieval.

It has been recognised for a long time that IT systems are key to unlocking multidisciplinary working and joining the dots of policy across health, social care and associated care sectors. The outcome of the CPA review is due later this month, it will be very interesting to see the direction this takes and what hooks there are for Hodges' model. The hooks I can see and well and truly intend to snag my lip upon here include:

• "paperless working";
• self-assessment;
• e-working at the point of care;
• collaborative working and treatment with education interventions;
• individual budgets and new commissioning models;
• social inclusion, social enterprise;
• social capital and employment.

Ultimately, I do believe Hodges' model will find its niche - why? Clearly, the 4P's with records and policy in particular are becoming ever more complex. At times like this a tool to -

simplify and summarise : engage and educate

- must have a place in our curricula, paper and e-record systems, client's and carer's hands and our cognitive tool sets.

Ack: links Care Services Improvement Partnership.

Workshop - Patient access to medical records: the patient's view

You may be interested in this online meeting/workshop for 3-5pm May 12th 

Patient access to medical records: the patient's view

It is open to all, free of course, and registration is here:

https://www.eventbrite.co.uk/e/patient-access-to-medical-records-the-patients-view-tickets-144456929565

The aim of the meeting is to add another little push towards getting this higher priority in the UK.  The assumption for the session is that most if not all who turn up will already be convinced of the benefits - but nevertheless it is useful to (re)hear some of those benefits from patients, and maybe one or two of the frustrations, and then get discussion from those present as to how it can be given higher priority by CCGs, Trusts, politicians, etc.

The meeting will be on Zoom and the provisional timetable is:

3:00-3.10            Ray Jones - Introduction (aim of the workshop, a little background, and welcome)

Short presentations taking questions and comments by the typed chat room

3:10-3.30            Liz Salmi - US experience of Open Notes

3.30-3.40            Jene Jinatun - experience 1 from Haughton Thornnley Medical Centre

3.40-3.50            Cheryl Ashton - experience 2 from Haughton Thornley Medical Centre

3.50-4.00            Fran Husson - experience of Patient Knows Best (London)

4.00-4.05            Nik Seth - comparing Patient Access in Estonia with the UK

4.05-4.10            Mar Soler-Lopez - comparing Patient Access in Madrid with the UK

4.15-4.45            Break out room discussion: how can patient groups help bring about better availability and uptake of patient access?

4.45-5.00            Feedback- 1 or 2 points from each group.

5pm                    Close

Please do register and come if you can, and please pass on to anyone and everyone. In particular if you have contacts in the media please invite them - given the need for patients to take control of their health information this should be topical and normally the media likes to take a 'personal story' approach.

Thanks

Ray

Ray Jones

Professor of Health Informatics, School of Nursing and Midwifery

Co-Facilitator for Centre for Health Technology

Research Gate

Email: ray.jones AT plymouth.ac.uk

University of Plymouth, Faculty of Health, PL4 8AA

__________

Source:

HIFA: Healthcare Information For All: www.hifa.org

Future - History: Information Systems or Care Records

Brian Warboys Professor of Software Engineering at Manchester University has stated that clinical staff lack the skills to make working information systems should leave it to IT professionals. A consultant physician and cardiologist at Bloomsbury and Islington agreed, the HSJ quote as saying:

"The fault lies not with the IT experts but with ourselves as clinicians. If we do not tell them what we want, how can they come up with the answers? ... There is a case for evaluating every IT solution available now and scrapping some of them". p.8.

Health Service Journal, 101:5259, 4 July, 1991.

'Coroners have warned the NHS on dozens of occasions that its record-keeping is so poor that patient's lives are at risk, an investigation by The Times has found. ...

Coroners have issued 62 warnings since 2013 in which they identified failings in record-keeping that could lead to the deaths of other patients.' ...

 'Simon Eccles, of NHSX, which is responsible for improving digitalisation, said that all of England should be covered by digital records by 2024 so staff could access the information needed to provide patients with the best possible care.'

Greenwood, G. Lost notes and illegible records 'risking lives of NHS patients'. The Times, October 2. 2019. p.16.

BCS - AI Health 2025 - Artificial Intelligence SG (reminder)

Date and time: Friday 7 November, 9:30am - 4:30pm

Location: BCS, The Chartered Institute for IT, Ground Floor, 25 Copthall Avenue, London, EC2R 7BP

Price: 42 - 108 GBP

Synopsis

BCS-SGAI, the BCS, The Chartered Institute for IT's Specialist Group on Artificial Intelligence, was founded in June 1980. Its mission is: "To foster achievement, capability and awareness in both business and research in Artificial Intelligence, and to promote the interests of the related community". It is one of Europe's longest-established groups working to support the community of artificial intelligence developers and users and is the organiser of one of the longest-running annual series of AI conferences in Europe: the AI-20xx series.

In England, 189 out of 208 (91%) hospital trusts are using electronic health records (EHRs) bringing opportunities and challenges and for Artificial Intelligence (AI). In the morning, there will be a session about EHRs with speakers from UK (animal health records), France (European Health Data Space infrastructure for the use and exchange of EHRs), and Spain (personal health records). Before lunch break, there will be a brief 101 hands-on tutorial about Neuro-Symbolic AI with short exercises. In the afternoon, there will be a session about clinical decision, exemplifying the use of AI-based healthcare technologies. Come along if you are interested in AI and its potential in healthcare.

• A comparison between open-source biomedical LLMs and general-domain LLMs (e.g. DeepSeek, Gemini, Claude, and ChatGPT-4)
• How to lower the technical skills overhead (understanding of AI and programming code) needed to use open-source LLMs for content generation and content analysis of text, images and audio
• Exploring the plausible benefits of neuro-symbolic AI, combining neural AI (to process and extract patterns for health issues from unstructured data) with symbolic AI (explicit representations of background knowledge)

There will be Certificates of Attendance for those who register and attend the event.

We hope that you will come and join us, and that you enjoy this new offering from the BCS SGAI.

Speakers

Programme

More details and registration ...

(I look forward to attending.)

My source: BCS SGAI mail list.

Better information means better care

BBC Radio 4: Inside Health 21 January 2013

Margaret McCartney and Mark Porter ask whether the anonymity of patient records on a new NHS database can be guaranteed?

NHS: Your records:

Using information about the care you have received, enables those involved in providing care and health services to improve the quality of care and health services for all. The role of the Health and Social Care Information Centre (HSCIC) is to ensure that high quality information is used appropriately to improve patient care. 

NHS England has therefore commissioned a programme of work on behalf of the NHS, public health and social care services to address gaps in information. Our aim is to ensure that the best possible evidence is available to improve the quality of care for all.  ...

http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx

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

individual

my interests	scientific interests
social interests	commercial interests

group - population

Share your voice: IRMS New Professionals Award

- entries close 31 January 2026

Dear students, apprentices and new professionals,

What are you up to between now and 31 January 2026? How about sharing your thoughts on anything to do with Information, Data or Records?

If you’ve not come across it, the Alison North New Professionals Award was set up by Alison back in 2010 to support emerging talent in our profession. 2025 marked its 15th year and the award continues to recognise and champion new voices.

Over the last fifteen years, entrants have offered everything from light‑hearted reflections to deeper insights into how we do what we do. Every applicant adds value, winner or not, helping the profession see familiar challenges in new ways.

What’s new for 2026:

We’re making submissions more flexible. Previously, you had to write an 1,000 word article.

This year you can still submit a written piece or you can record one instead (audio or video). As long as your entry covers 1,000 words’ worth of content it’ll be accepted and shared with the panel for consideration.

Why bother?

We know you’re busy studying or finding your feet in new roles. But for a little time and creativity, successful entrants will receive:

• A funded place at the IRMS Conference 2026—a brilliant opportunity for content, networking and professional contacts. (IRMS 2026 is scheduled for 17–19 May at the Celtic Manor Resort, Wales.)
• Publication of your winning entry to our 1,000+ members, and sharing across our partner networks and the wider profession.
• Plus additional support to help you settle into—and thrive in—our fabulous profession.

So, ignore the inner imposter that says you’ve nothing to say. Set aside some time over Christmas and the New Year, and share your ideas.

For inspiration, our Patron, Scott Sammons, even interviewed recent winners on his podcast to explore why they applied—and why you should too.

(See https://theiglighthouse.podbean.com/e/special-episode-irms-new-professionals-award-carys-hardy/?token=dd9fdcd3d516c13f4874d8baca1c7b64 )

How to apply:

Deadline: 31 January 2026
Format: Written (1,000 words) or recorded (audio/video) equivalent
Details & submissions: https://irms.org.uk/professional-development/awards/new-professionals-award/

What’s stopping you?

Not a new professional yourself? Please share the application page with people who’d be a great fit and encourage them to apply—every little helps.

Best wishes,

Carys Hardy (She/Her)
Communications & Marketing Officer
Information and Records Management Society Ltd (IRMS)
Email: info AT irms.org.uk 

My source and list archives at: 
https://www.jiscmail.ac.uk/cgi-bin/webadmin?A0=RECORDS-MANAGEMENT-UK

Personal Health Records: Part II - revisiting Kim and Johnson 2002

Part I continued ...

What Kim and Johnson reveal is a level of transience that can be quite scary in this context. True, electronic health records can be archived and printed, but the latter surely defeats the purpose of the 'e'. Printing undermines the credentials. The virtual landscape presented in part I by checking the current status of these domains highlights the issue of ownership of data in a way that has provoked much debate in social media and the transferability of a person's data - information. If I want to move to another vendor, system, company (however the 'entity' is described) there needs to be standards and a degree of interoperability to facilitate this. 

Next, we have to bow to the notion of a year on the internet compared with 'real time'. M-health was a dream a decade ago. Here is another pressure on the PHR and its family members. A public-facing health record, whatever its nomenclature, must not only be responsive to the public and professional users and the 'total stakeholder community'. Now the record must be responsive according to device: from desktop, to tablet through to mobile phone.

In 2002 the PHR project was set to run and run. It had a slow, strong pulse with speedy recovery after exertion. The PHR looked fit for Olympic^* endeavors.

But then the algorithms set to change personal health care (to fuse ill-health and well-being) suffered a major arrhythmia. The fate of those who became the new PHR frontrunners, the heavyweights no less: NHS's Healthspace, the initiatives of Google and Microsoft suffered the same fate. This post is from 2009:

Self-care in e-space and the need to Impress

Given the changes since Kim and Johnson you have to wonder what the next decade will bring. Whatever there will still be fog, but that just adds to the excitement as we climb the trees. Then we realise that to all of the users of health information systems (remember the user and stakeholders?), whichever TLA is employed, they are all X-HRs by proxy.

Kim MI, Johnson KB. Personal Health Records: Evaluation of Functionality and Utility. Journal of the American Medical Informatics Association. 2002. Mar-Apr; 9(2):171-180. Selected for inclusion in the IMIA 2003 Yearbook of Medical Informatics. 

 ^*All trademarks acknowledged.