NIH: Suggest social justice items for Electronic Health Records

My source: Spirit of 1848 list [The collaborative tool is very interesting]
Let's make suggestions for inclusion of social justice factors in Electronic Health Records by participating in the NIH activity described below.

Dear colleague,

Your input is requested to help make recommendations for a standardized set of patient-reported variables to be collected in primary care and public health electronic health records (EHRs), which will lead to unprecedented data harmonization and opportunities for health research. In order to participate in this process:

• Please visit the website for the collaborative tool: www.gem-beta.org
• Click on the blue button at the top titled "EHR Campaign." Or alternatively, click on the News tab and then the associated EHR campaign title.
• Read the summary statements written by the expert panels
• Enter your comments on the recommended measures, and if needed, suggest alternative measures (see attachment for detailed instructions).
• Forward this request to your colleagues who may be interested in this initiative

Comments will be accepted through April 4, 2011.

Background about this Collaborative Effort

Several institutes within the National Institutes of Health in collaboration with the Society of Behavioral Medicine are coordinating an effort to identify a core set of brief, practical measures to recommend for use in adult primary care and public health electronic health records (EHRs), and we are inviting you and all members of your affiliated organizations to join this collaborative effort.

The HITECH Act and the Patient Protection and Affordable Care Act place new emphasis on the widespread and meaningful use of electronic health records (EHRs). This is an important advance, with one significant exception: Currently EHRs fail to capture data reflecting crucial health behaviors and psychosocial issues. Such patient-reported variables are both health outcomes themselves, and major determinants of other health outcomes.

To address the critical need for patient-reported data, we are organizing an effort to evaluate and recommend actionable, patient-reported measures of health behaviors and psychosocial factors for use in electronic health records (EHRs) within adult primary care and public health settings. In order to facilitate broad participation in the development of standard measures we are using a three-phase process of consensus building.

In the first phase panels of subject matter experts were convened for each of 13 behavioral domains to review available measures and to recommend up to 4 reliable, practical measures for each domain that would be appropriate to utilize in primary care and public health settings and to be reported in EHRs.

*Your input is being requested for the second and third phases of the project.*

For the second phase we are using the NCIs Grid-Enabled Measures (GEM) Database to gather feedback from all stakeholders. In order to participate in this process, please visit the GEM website, www.gem-beta.org, and click on the blue button at the top titled "EHR Campaign." Or alternatively, click on the News tab and the associated header for the EHR campaign. Begin by reading the summary statements written by the expert panels, view the recommended measures, enter your comments on the recommended measures, and if needed, suggest alternative measures. Comments will be accepted through April 4, 2011.

The third phase will be a workshop/town hall meeting on May 2, 2011 at the NIH bringing together scientists, practitioners, policy makers, and patient/consumer representatives to review the results of this campaign and make recommendations on standard consensus measures for behavioral health and health behavior screening in primary care and public health settings. We encourage everyone interested in this effort to participate, and more information about this meeting will be forthcoming. Immediately following this workshop there will be a closed session meeting of key stakeholders to make final recommendations based on feedback obtained from the GEM tool and the open meeting.

Workshop participants will receive a summary of the meeting as well as information on final recommendations. Subsequent to the meeting, organizers and key stakeholders will discuss strategies to build support and implement plans to advance the adoption and incorporation of a core set of patient-reported behavioral and psychosocial measures in primary care and public health EHRs.

We truly thank you for your participation in this project to standardize the collection of behavioral data in EHRs because it will enable the collaborative group to put forth the best possible recommendations and ultimately improve patient outcomes.

Sincerely,

The EHR Measures Meeting Planning Committee
Maureen P Boyle, Ph.D.
AAAS Science and Technology Policy Fellow
Office of Behavioral and Social Sciences Research
Office of the Director, NIH
31 Center Drive, Building 31, Room B1-C19; MSC 2027
Bethesda, MD 20892-2027

Proximity: Relationships, Records, e-Health - Person-centredness near and far

When data protection and confidentiality is debated "the need to know" is often wheeled out as a rationale for access to personal identifiable data.

See the following:
NHS Confidentiality Consultation - FIPR Response (esp. #18).
DoH, Confidentiality, UK

In addition, if I need to access the record of patient held at hospital 'x' from hospital 'y' what is the health care relationship that prompts and justifies this need?

At present visiting nursing and care homes, you go knowing that data capture and recording (care assessment) is a fundamental requirement. Having a secure laptop for community has long been promised. While tech solutions are available and implemented elsewhere, my lack of such technology prompts me to imagine a future visit. ...

Pulling up at the nursing home I walk up the drive, ring the bell. While I wait the new tablet device in its bag has already introduced itself to the home. As I am allowed in - my identity assured - the tablet continues its dialogue, it:

1. Downloads and updates existing active client data.
2. Downloads additional data as per the agreed dataset on the new referral.
3. Checks on items 1-2 with a review of recent prescribing for key psychotropic medicines.
4. It checks the most recent NICE, Cochrane evidence and reconciling the local care knowledge. (This may seem excessive at present, but come personalised medicine this will be crucial).
5. Will check on most recent clinical reviews and due dates.
6. The h2cm template is there ;-) ready to present the care domain summary for the general physician ... and possibly (roles?) the next care professional to visit this home and this resident.

The significance of relationships is usually denoted by distance. Personal space is rather obviously spatial. This is how we recognise (well one of the ways!) the meaning and significance of an intimate relationship. In care situations with individuals who are confused and potentially aggressive we are conscious of the need to have due regard and respect for that person's personal space. Spaces and boundaries have to be negotiated in a variety of ways and means. 

Health information technology has already made effective use of role-based access to systems. If we take person-centred care to the nth degree, proximity can also count as it does in mobile health (m-health). Whilst to effect a role is to be in a certain location and context (sat at the office PC in the hospital) roles are organisationally and politically defined. Proximity is also contextual and situated in other ways, my proximity to:

• the nursing home;
• the individual's room;
• the individual themselves.
• (and their relatives)

While telecare / informatics can deliver a dividend in remote care, it is essential that it can also demonstrably support person-centred care. The best way (clinically assured) to do that for many activities is person-to-person contact. Just because one-side of the relationship may not recall the encounter as little as five minutes after, does not mean that there is no value in sustaining the ring of the bell, the exchange of s-miles, the record that results and other background conversations.

Image source:
Gestalt - proximity
http://graphicdesign.spokanefalls.edu/tutorials/process/gestaltprinciples/gestaltprinc.htm

Call for Papers: 1st Int. Workshop on Pervasive Care for People with Dementia and their Carers (PCPDC-2011)

(To the webmasters of http://www.pervasivehealth.org please check the status of your site - 'attack site')

Dublin, Ireland, 23 May 2011

http://trail.ulster.ac.uk/pcpdc/

To be held in conjunction with the 5th International ICST Conference on Pervasive Computing Technologies for Healthcare 2011

The global population of persons aged 60 and over is rising dramatically. Between 2006 and 2050, the number of people aged 60 and over will double from 650 million to 2 billion people representing 22% of humanity. One group of the ageing population that is particularly vulnerable to loss of independence is those affected by dementia. It is estimated that around 820,000 people in the UK have dementia. Recently emerging computing and assistive technology have been used to attempt to improve the quality of life for people with dementia..

The workshop aims to provide a forum for discussion on challenges and opportunities in bringing technology to support people with dementia. The workshop will feature the theme of ‘engaging people with pervasive technology’.

Research topics included in the workshop

This workshop will feature the theme of  ‘engaging people with pervasive technology’ in dementia research. Researchers from academic, healthcare, industrial and third party organisations are invited to contribute. Early researchers and researchers from healthcare are particularly welcome. Research areas include, but are not limited to:

Theme 1 – What are the opportunities of pervasive care technology?

Development of pervasive ICT systems
Human computer interface design
Behaviour monitoring and activity recognition
Knowledge representation and dissemination
Data analysis and interpretation
Sensor design and application

Theme 2 – User engagement

Key issues emerging when working with people who have decreased capacity for consent
Ethical issues for implementation
Methods for engagement
Pitfalls of engaging people with dementia, their carers and intermediate users

Important dates

Submission deadline:          25th February 2011
Notification of acceptance: 25th March 2011
Camera-ready copy due:    4th April 2011
Conference / Workshop:    23rd – 26th / 23rd May 2011

Format

Submitted papers should not be longer than 4 pages in standard IEEE two-column format.

For more detailed formatting instructions please see http://www.pervasivehealth.org/?page_name=author_skit.

Accepted papers will be published online in IEEE Xplore Digital Library (to be confirmed).

Information Revolution and Greater Choice and Control - webchat Nov 9

Put your questions about the Information Revolution and Greater Choice and Control direct to Andrew Lansley, Secretary of State for Health, on November 9 at 1.30pm.

People can ask questions in advance by emailing:
informationrevolution AT dh.gsi.gov.uk - or -

 by Tweeting their question, using the hashtag #inforevolution.

The webchat will be available from November 9 at www.dh.gov.uk/informationrevolution and you can watch the live Q&A on screen, ask questions and leave comments. We will also be tweeting Andrew Lansley's answers and the comments we receive. A transcript of the webchat will be available on the website after the event.

I would be grateful if you could bring this to the attention of any interested individuals or groups.

With best wishes

Anne Cooper
National Clinical Lead for Nursing
Office of the Chief Clinical Officer
NHS Connecting for Health
anne.cooper AT nhs.net
http://www.connectingforhealth.nhs.uk
NHS Connecting for Health supports the NHS in providing better, safer care by delivering computer systems and services which improve the way patient information is stored and accessed.
Additional link:
http://conversations.dh.gov.uk/2010/10/17/home/
My source:
British Computer Society Nursing Specialist Group

Drupal musings 18: healthcare group, DrupalCamp and #183

It's a fair trip to Edinburgh from NW England just for one day on the 30th October, but DrupalCamp looks like it will be worth it. I've just booked a room for the Friday night and will set out straight from work.

There's been a Drupal healthcare group for quite a while, now there's also a list of health sites using Drupal:

http://groups.drupal.org/healthcare-sites

One day, one day....!

I'm not sure if this post is contrived: a means of getting to post #183. That was the total for 2009 and here we are already.

If one day, one day is going to happen then this blog is going to slow down soon. No suspended animation though. There will be a pulse.

The involvement of a few link partners on W2tQ is very helpful. It seems the archives are of interest. This not only supports the IT side - future hosting ... but attending events (DrupalCamp travel, B&B) and possibly conferences...

As a full-time nurse I sometimes have to rely on holidays to attend events that really float my boat (or fly my plane). Drupalcons are a case in point. It's not easy trying to simultaneously span nursing, education and informatics, but it really is fascinating [and it makes me :-) ]. Take the following conference:

Celebrating the Past and Embracing the Future:

Evolution and Innovation in Problem-based Learning

March 30th and 31st 2011 in Grange-Over-Sands, Cumbria, UK

I raise this because problem-based learning is a real gift for the health career model, but this gift runs to £235 (which of course for two days training / education is very reasonable - there is a free half-day workshop too). 
So, One day, one day - but meanwhile enjoying the journey and the many bridges. ...

The Empowered Patient Conference

HIFA2015 brought this conference to my attention rather late, but it is nonetheless well worth posting. Indirectly for the health career model, which can facilitate patient and carer education and empowerment. In addition to demonstrating the global potential of h2cm this announcement also demonstrates how small the world is becoming. I had the pleasure of hearing Mark Duman present in Manchester at a local BCS medical informatics meeting in the spring. I've since maintained a link to the Patient Information Forum here on W2tQ and Links III - 'Patients, Carers & Self-Care'.

If you are organising a conference or event for 2011 ... please let me know. I may be able to assist with free publicity on the care domain pages interpersonal, sciences, political or sociology - especially if your themes are similar: nursing, informatics, education, global health, self-care. ...

HELP is pleased to organize The Empowered Patient Conference in Mumbai on 20 October. The website is at http://www.patientpower.in/

Traditionally, Indian patients were passive and were quite happy to leave all medical decisions to the doctor. However, times have changed, and internet positive patients are hungry for information and want to work in partnership with their doctor. This is a huge challenge - and a great opportunity as well. We feel patients are the largest untapped health care resource and that Information Therapy is Powerful Medicine!

In partnership with the Patient Information Forum, UK, HELP is organizing The Empowered Patient Conference. Our keynote speaker will be Mr Mark Duman, President of PiF:
http://www.pifonline.org.uk/home/

Information Therapy can help patients (and health insurance companies!) save money on medical care by:

1. Promoting SelfCare and helping them to do as much for themselves as they can.
2. Helping them with Evidence-Based Guidelines, so that they can ask for the right medical treatment that they need - no more and no less.
3. Helping them with Veto Power, so they can say No to medical care they don’t need, thus preventing overtesting and unnecessary surgery.

Information Therapy is good for doctors and hospitals as well, as patients who are well-informed have realistic expectations of their treatment. They are much more likely to have a good medical outcome and much less likely to sue.

How can we all work together - doctors, patients, hospitals, health insurance companies and IT companies, to ensure that patients are at the heart of everything we do in healthcare?

Dr Aniruddha Malpani, MD
Medical Director
HELP - Health Education Library for People
Excelsior Business Center,
National Insurance Building,
Ground Floor, Near Excelsior Cinema,
206, Dr.D.N Road, Mumbai 400001

Helping patients to talk to doctors! Information Therapy is the Best Prescription!
Read over 20 health books free at www.helpforhealth.org
Read my blog about improving the doctor-patient
Relationship at http://doctorandpatient.blogspot.com/
Join India’s first health wiki at www.myhealthpedia.in

Philosophy of information empowers philosophy of care

The moral and ethical dimensions of nursing quickly become apparent to individual practitioners and professional associations. Philosophy in nursing boasts specific courses, journals and groups, for example:

International Philosophy of Nursing Society (IPONS)

Nursing Philosophy (journal)

International Centre for Nursing Ethics

Here on W2tQ, in papers and on the website I have stressed the importance of the health career model as a framework that can utilise information as a fundamental and potentially unifying concept.

Expanding on the post last week about the philosophers' magazine [tpm50] let's look at Floridi's piece on the philosophy of information (PI). The 50 ideas featured are each only granted two pages, but this has a definite philosophical equivalent twitter-styled appeal. On page 42 (- 43) Floridi notes that:

... PI possesses one of the most powerful conceptual vocabularies ever devised in philosophy. This is because one can rely on informational concepts whenever a complete understanding of some series of events is unavailable or unnecessary for providing an explanation. Virtually any issue can be rephrased informationally. Such semantic power is a great advantage of PI, understood as a methodology. ...

It shows that we a dealing with an influential paradigm. But it may also be a disadvantage, because a metaphorically pan informational approach can lead to a dangerous equivocation, namely, thinking that since any x can be described in (more or less metaphorically) informational terms, then the nature of any x is genuinely informational. (Luciano Floridi, 2010).

Admittedly Floridi's context is the position and status of PI as an emerging discipline within philosophy. As he notes the vocabulary while powerful lies in the discipline of philosophy.

Given my preoccupation with information, Floridi's observation above is a timely warning for me and the many nurses who in the past saw a concomitant risk that in adopting the nursing process, patients (and carers) would be processed. Ironically, this processing concerned information. The workflow - form and layout of the documentation - was prescribed. This is an old tale, with the nursing process being subsumed within the routine work of nursing. Perhaps though this also demonstrates a need for a new debate?

My interest in information is as a trope to explain the significance of the care (knowledge) domains that underpin Hodges' model. Crucially, though these can stand on their own as nursing philosophy issues. Joining the efforts of the nursing philosophers above, this can bring information and philosophy out of the academic realm to include a more practical and grounded variety of topics:

FROM: personal identity,
definitions and ownership of computer based records,
utility versus security of information (summary care record ...),
definitions of information (data, knowledge) - through
TO: patient information and patient informatics, ...
where is collective informatics^# heading?

Taking Floridi's lead - which of the above .... are core nursing (health) information concepts (and not just freeloading info-masqueraders along for the ride)? Well, that is a question for a new community of scholars to decide?

Philosophy resources: Interpersonal care domain

^#Collective informatics = all the claimed informatics disciplines combined?

International Journal of User Driven Healthcare (IJUDH) CfP

Dear Mr. Jones

In view of your work in patient-centered care, I’d like to invite you and/or your colleagues to submit a paper to this Special Issue of the new journal described further below and via the web link provided. I think our global readers would be very interested in your thoughts (and projects) on innovative ways to get relevant healthcare information into the hands of ‘users’ (both patients and providers), within the user-driven EBM paradigm, per below.

Please also share this call for papers with your colleagues.

Thanks for your consideration,

Susan Ross, MD

International Journal of User Driven Healthcare (IJUDH) Call for Papers

Editor-in-Chief:
Rakesh Biswas,
Center for Scientific Research and Development (CSRD),
PCMS Campus, India

Published: Quarterly

Call for Papers - Special Issue:

Submission Due Date: July 1, 2010
Special Issue On User Driven Healthcare and Evidence-based Medicine

Guest Editors:
Susan Ross, MD, FRCPC

Introduction

User Driven Healthcare (UDH) is part consumer-driven healthcare, part narrative medicine, and part Health 2.0. It stems from a concept of participatory healthcare whereby all stakeholders, enabled by information, software, and cyber-community, focus on healthcare value. But where does Evidence-based Medicine (EBM) fit into this framework? It is sometimes forgotten that EBM is a three-legged stool, comprised of the triad of evidence +provider expertise + patient preferences. In this EBM framework, provider expertise is needed to bridge the inferential gap between population-based evidence and the individual patient. And each patient's values and preferences should narrow that inferential gap further. But since the introduction of EBM nearly two decades ago, the primary focus of EBM proponents has been on Evidence, at the expense of patient preferences and provider expertise. Perhaps this is why the promise of EBM to foster the most efficient and high quality healthcare has not yet been realized.

Objective of the Special Issue

This Special Issue will focus on the following questions: Is the recent emergence of User Driven Healthcare really a new, post-EBM paradigm for healthcare, or just an overdue consideration of the other two legs of the original EBM stool? How might this trend affect all stakeholders?

Recommended Topics

Topics to be discussed in this special issue include (but are not limited to) the following:

• Developing valid patient-level evidence using the Web
• Evidence generation—clinical research strategies using social media and mobile technologies
• Examples of UDH to a) help formulate the right questions to ask in EBM; b) develop answers to those questions; c) disseminate the answers to patients and providers with a need to know; and d) test the impact of UDH-generated Evidence on patient outcomes
• Helping online patients sift the ‘wheat’ from the ‘chaff’—information management for patients in an EBM world
• How to incorporate patient preferences and values into ambulatory care decision-making (i.e., into the 10 minute visit)
• Measuring the impact of UDH on patient outcomes
• Patient-level decisions vs. population-level evidence (bridging the inferential gap)
• Pharmaceutical communication strategies using social media—impact on healthcare quality and costs in an EBM framework
• Place of social media in EBM—patient and physician online communities
• Practice of UDH vs. EBM around the world
• Regulatory issues of evidence dissemination by industry using social media in healthcare Statistical and other evaluative methods to assess the validity and reliability of evidence developed using social media and mobile technologies
• Trends in N-of-1 studies, and their relevance to EBM and UDH
• Use of collective intelligence to solve healthcare problems for individuals and communities

Submission

Researchers and practitioners are invited to submit papers for this special theme issue on User Driven Healthcare and Evidence-based Medicine on or before July 1, 2010. Submissions received after this date will be reviewed for possible publication in subsequent issues of the journal. All submissions must be original and may not be under review by another publication. INTERESTED AUTHORS SHOULD CONSULT THE JOURNAL’S GUIDELINES FOR MANUSCRIPT SUBMISSIONS at http://www.igi-global.com/development/author_info/guide.asp. All submitted papers will be reviewed on a double-blind, peer review basis. Papers must follow APA style for reference citations.

All submissions and inquiries should be directed to the attention of:

Susan Ross, MD
Guest Editor
Email:sdross720@gmail.com

Health, social care and informational emaciation

We hear a lot about information and how important it is, being in what is described as the information age, the information economy. ...

Nurses, patients and carers (plus managers) would instantly recognise that if a care plan and subsequent care delivery was based on the following assessment:

oriented, not depressed	hypertension, falls, dizziness, headaches, pyrexia
carer due hip operation	admitted 1st May 2010 1200hrs to clinical decisions unit

- we would be acutely concerned.

Clinically this is a case of informational emaciation. The information above is rather thin on the ground, this in turn affects the knowledge that can be gleaned in formulating, negotiating and agreeing actions. Even in the information sparse example above each of the care domains has some content; is that always the case?

Use of the word emaciated in this context is not intended to diminish the plight of people who are physically emaciated, poorly nourished.

This post is intended to highlight another aspect of poverty.

As the Global Healthcare Information Network (HIFA 2015) argues and campaigns - information is a means to emancipation - a way to overcome information emaciation.

Additional links:

Picker Institute Europe

Patient Information Forum

Patient Information Advisory Group

Putting 'care' in a holistic frame

How many frames do you need?

*infocare: care demographics, directories, media, literacies...

care communication, self care, care ethics, care philosophy, emotional care, pastoral (green) care, therapeutic care, care beliefs, interpersonal care, MENTAL HEALTH CARE cognitive care, holistic care, care responsibility, care ecology	emergency care, physical care, care model, theory, plan, care assessment, evaluation, care curricula, intervention, care process, evidenced care, BASIC NURSING CARE intensive care, coronary care, special care baby unit, *infocare, nursing care, medical care, health care, e-care, surgical care
collaborative care, child care, personal care, older adult care, informal care, SOCIAL CARE, family care, care education, community care, care community, residential care, care dependency, abusive care, care risks	duty of care, care policy, care provision, inspection, standards, care economics, care outcomes, care legislation, care home, care contract, care advocacy, care quality, CARE AID, care qualification, regulation, State care, private care, care insurance, CARE RIGHTS, care service engagement, prison care

Don't forget the 5th, virtual, spiritual frame?

Where is that?
It is wherever you need it to be. ...

Additional suggestions welcome: h2cmng at yahoo.co.uk