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.

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.

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

FROM: A community mental health context TO: Acute EMR/EHR and other ...

or: Will 21st Century health and social care informatics truly begin on Sunday 10 10 10 ?

I've been a nurse AND info tech / informatics enthusiast since 1981. As an advocate of info-tech as a means to improve the quality, effectiveness and safety of health care - I must confess; I feel I have let down those colleagues purely there to 'nurse'. .

After 20+ plus years the nearest we (the team and I) got to a system that answered our questions was a small PICK database and a later MS Access database. These focused on referrals and data capture - demographics, problems, interventions (WHO and what) and outcomes. Although the number of data items was not great, no more than 30 the insights we could glean from queries was surprising. People versed with databases, datasets and research readily appreciate how even small datasets, carefully thought out and planned, can answer a diverse range of questions (and generate countless new ones too!).

I noticed in the mid-1980s to mid-1990s the development of customer management software and recognised that clinicians have a need: caseload management.

Even now the requirement of 'X' visits per day, the number of information systems and lack of integration (health - social care) mean that in many instances there is still no readily accessible caseload manager for the individual practitioner. This is an outcome and amid all the talk around 'engagement' (with a 'E').

Perversely, ironically, paradoxically (take your pick) at a time when Lean is (presented and) needed, there are scarce resources to do the things that should now be embedded (routinised) into the life history of the professional. This includes what the professionals do WITH the patients, carers, data, information ...

I speak to student nurses (and other disciplines) regularly as a nurse mentor and sign-off mentor. Their exposure to health care informatics to me is minimal, adhoc, and when it has happened it has signally failed to strike a cord. A very small (and so non-significant*?) sample admittedly.

Informatics remains an academic 'must do'.

Perhaps 21st century informatics only begins on Sunday -

101010

Whatever:
as it stands informatics is a management pursuit.

Slippage is a fact of project management, but words present their own challenge when target driven 'secondary' uses become 'primary'.

*surely not.

[A version of this post first appeared on the Healthcare Information and Management Systems Society HIMSS group on LinkedIn.]

CfP IEEE IC Special Issue: Web Technology and Architecture for Personal Health Records

IEEE Internet Computing: special issue planned for 2011

Guest Editors:
Chimezie Thomas-Ogbuji [cut at case.edu], Karthik Gomadam [karthik at knoesis.org], and Charles Petrie [petrie at stanford.edu]

Final submissions due 1 November 2010
Please email the guest editors a brief description of the article you plan to submit by 15 October 2010.

The healthcare industry is well positioned to take advantage of contemporary Web-based architecture to address the technological challenges of personal health record (PHR) systems, many of which require simultaneous advances in engineering, informatics, and network-based applications. Of particular interest are the PHR systems that capture healthcare data entered by individuals.

This special issue seeks original articles describing development, relevant trends, and challenges in incorporating contemporary Web-based technology for the primary functions of PHR systems. The main functional categories of interest are information collection, sharing, exchange, and management.

Appropriate topics of interest include:

• Web-based, structured data collection in PHR systems;
• implementations of access-control policies and healthcare data sharing;
• distributed, identity-based authentication methods;
• digital signature and encryption techniques;
• Web portal architecture’s general components and capabilities as the basis for a PHR system;
• architectural paradigms regarding connectivity to other healthcare information producers and consumers;
• data models for PHR systems;
• distributed data subscription and publishing protocols;
• successful Web-based applications for chronic disease and medication management;
• health applications for PHR systems on mobile devices;
• privacy and security issues;
• HIPAA and its implications for adopting cloud computing for PHR applications; and
• semantics for PHR interoperability and applications

http://www.computer.org/internet/cfp.htm

....

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

Working with older adults you realise how unselfish a group they are with regards to their care needs: "spend the money on the children who need it, they are the future."

You also realise that although there are growing numbers of 'silver surfers' (sorry) and their number will swell - the use of digital technology by the general public remains yet another potential source of inequality.

Many years ago I came across HealthSpace (UK) as a fledgling approach and application. I was really impressed as it underlined the need for a generic conceptual framework for health and social care - from senior school through to older age.

It is often said that effective communication needs a channel that is noise free - well here in Hodges' model is a resource to reduce noise for health information across many contexts:

• education
• prevention
• consultation
• social marketing
• self-care
• care planning, evaluation and management
• carer support
• supervision

Demographics also underlines the opening remark in this post and for older adults and many younger that matter of choice arises when it comes to the deployment of digital technology. Yes, many forward thinking people will readily jump on board and use ICT to study, learn, commission, record and co-ordinate their own care - or that of a relative. But what about those who will not use HealthSpace or another personal health records [PHRs]?

For those who do not want to engage - are they to be literally pressed into service? Obviously not - and besides recruitment to the UK services is growing. Jokes aside though the pressure to get the public to add value to their own care is critical to the future sustainability of the health and social care system.

Which brings me back to HealthSpace and the following news on e-Health Insider:

'HealthSpace expansion plans shelved'

Last year’s Health Informatics Review outlined a wide-ranging role for HealthSpace, but the DH has now done a U-turn and demanded more evidence of the site’s value to patients before pushing ahead with further expansion.
...
An outline business case worth £80m to £90m – one source puts the figure at £98m - had been developed by CfH, which was to have been submitted to the Treasury earlier this year.

However, the DH is understood to have spiked the business case, seeking more evidence for the value of HealthSpace, which has not received the backing of Christine Connelly, director general of informatics.

Dr Neil Bacon, founder of the doctors’ website doctors.net and the patient website iwantgreatcare.org, said he was unsurprised that the DH had shelved its plans.

“I think this is their way of quietly getting rid of it,” he told EHI Primary Care. “In the commercial world, if a solution with more than 250,000 potential users had only been used by 400 people it would already have been put out of its misery.”

Dr Bacon said he believed there was a clear and growing demand for patients to manage their own health records but that innovative, entrepreneurial solutions rather than government-led solutions would meet that demand.

More to follow no doubt - but do take care even now if you live by the coast ....

Additional links:

Google Health
 
Microsoft - Health

Digital Britain

The Impress Service

The Royal Navy

Image source: Press Gang stamp

Mind the glass! Socio-technical engineering and vision

Amid the efforts to increase the ease with which technology integrates into our lives is the realization that some areas are more challenging than others. Education and health care spring to mind. In both of these fields if you are something of an expert in ICT and a subject domain expert then you can potentially pull off something of a coup. Being able to sit on the fence and appreciate two critical dimensions of an ensuing discussion about a clinical or learning system (perhaps even both) you can climb down off said fence and make a real difference.

From experience as a nurse, though it is (always) wise for any one practising as an informatics 'clinician' to constantly look over their shoulder. This domain is one that could be rationalised, automated, by-passed especially when we contrast new and emerging informatics roles across health disciplines with generic trends in health records EHR and PHR?

In the forthcoming generations of health record systems, informatics specialist will need to make their technical knowledge more accessible in their role as:

key contributors to -
SOCIO-TECHNICAL
- balance and patient (public and carer) engagement.

As community and personalised models of care influence the development of PHR, then hospital based EHR will themselves be forced to become transparent. There is also the matter of how the service integration agenda will influence how systems are described and 'sold' as a product and (essential) benefit. As the majority of readers will recognize at the end of the day - it's about the information - knowledge: not the technology.

Perhaps on reflection this is the key to new or existing informatics roles:

- we are engaged in "engineering transparency" ....

Inspired by a discussion on the LinkedIn HIMSS list.