Now Here is a Really Fabulous Idea!

I came upon this press release during the week. If ever there was an example of Web 2.0 in health this is it!

iGUARD.ORG ALTERS THE FACE OF E-HEALTH

NEW WEB SERVICE DRAWS 10,000 NEW PATIENTS WEEKLY

First and Only Site Allows Patients to See How Drugs Actually Work in Real People

Princeton, NJ, April 30, 2008 – Today, iGuard.org, a free, patient-driven online healthcare community, announced the launch of an innovative new tool that brings patient empowerment to a new level. With almost half of all Americans taking prescription drugs, and eight out of ten surfing the web for their healthcare information, iGuard.org now lets users see real time reports of side effects experienced by iGuard.org members who have completed a brief survey on their medication experience. This is the first web service to give patients personalized drug information – giving them the knowledge and power they need to manage their own healthcare.

How is iGuard.org Different?

iGuard.org is now uniquely positioned to provide "live" updates on how medications are working by posting real-time reports of side effects as experienced by members. Unlike other health and drug-safety websites, which provide static content, re-written information found on package inserts, and forums for patient discussions, iGuard.org monitors how different drugs are working across its network of users by conducting random surveys on an on-going basis. Members of the community can easily access pooled, anonymous information on side-effects, safety and effectiveness so they know what to expect when starting a new treatment.

"iGuard.org was created for patients to share information in a simple, structured way. No other site out there has a balanced information exchange that "demystifies" the process, can give our users a level of comfort and arm them with the information they need to get informed and stay informed about their healthcare," said Dr. Hugo Stephenson, founder and creator of iGuard.org with a specialty in epidemiology and drug safety. "Since inception, the FDA has given us feedback and direction on how to improve our value to those patients. The release of this new data arms our patients with far more information than they've ever had before."

The site, which went online in October last year, has taken off with more than 10,000 new users signing up every week. Patients rely on the feedback they find on the site and often communicate that information to their personal doctors. "iGuard.org has been among the most valuable sites I've come across," said patient Mary Lou Sakosky of Troy, Ohio, who was diagnosed with several conditions including heart disease, bipolar disorder, Bell's palsy and thyroid disorders. "Without the site, I wouldn't have known about many of the side effects for the prescriptions I'm taking and everything I need is in one place. Thank God for iGuard.org."

Demystifying the Clinical Process

If patients want to learn about treatment options for their diagnosis, they can see at a glance the average effectiveness and satisfaction scores, the likelihood of side effects, and what additional information others wish they were told before starting the medication. According to feedback of iGuard.org patients taking a common pain medication to treat shingles and fibromyalgia, 70% experience side effects, including drowsiness, weight gain, grogginess and dizziness, and 45% wish they were told more about the potential side effects before starting the medicine. And among users of a new smoking cessation medication, 69% say they experience side effects, especially nausea and vivid dreams, and 28% wish they were told more about the potential side effects and potential drug interactions, prior to taking the medicine. Most physicians don't have this type of information readily available for their patients.

"It's crucial that patients receive accurate drug safety information, and iGuard.org is an outstanding source for that information," according to Joe and Terry Graedon, co-authors of the nationally syndicated The People's Pharmacy® newspaper column, and co-hosts of the award-winning health talk adio show, The People's Pharmacy®, that airs weekly throughout the ountry. "The site is easy to use and it takes complex information and makes it available to consumers. The combination of patient feedback and side effect analysis is hard to find anywhere else."

Helping the Scientific Community

Feedback obtained from the website extends beyond the patient to the scientific community. Rather than accept advertising or sell data, iGuard.org generates revenue by conducting surveys among the iGuard.org membership. Pooled results from these surveys allow companies to learn about improving drug research and development, as well as patient attitudes towards drugs already on the market. Patients must first consent to participate in a survey and are compensated for their time. "We feel very strongly that connecting real patients in the real world with drug researchers will allow us to learn about medicines much faster," stated Dr. Stephenson. "And in the end, isn't that what we all want?"

About iGuard.org

iGuard.org, headquartered in Princeton, NJ, is a free and secure source of information for registered users who want to get informed, stay informed and share feedback about their medications. It offers balanced and timely content to help patients manage their healthcare for themselves or loved ones. Registration is free online at iGuard.org.

The press release is found here:

http://www.iguard.org/help/news/preleases.html

I have nothing but admiration for the guys doing this – what a great idea! I hope they really can make enough money to make the service viable and sustainable.

As a test – and being ‘an old man on drugs’ I have registered and told it all about my drugs – the whole thing worked well and gave sensible and pragmatic advice. Nicely done indeed!

David.

What the Hell is Wrong with DoHA?

Just a very short blog.

Why – after almost six months – can’t the Commonwealth Department of Health sort out its web-site?

Seems to me if they can’t do this – and we keep being referred to the archive site something serious is wrong!

This banner has become just embarrassing!

“Material on the Department of Health and Ageing web site is being reviewed following the federal election on 24 November 2007. The department’s previous web site and its essential health and ageing information have been archived, but remain accessible here. This revised web site will reflect the new government's policies, programs and priorities for the health and ageing portfolio.”

See http://www.health.gov.au/ (as of March 6, 2008)

I fear this reflects a ministerial team that simply does not want to properly communicate with the public and has a very bad attitude to e-Health.

The public is entitled to an easy to use and navigate web site with all the relevant information!

How hard can it be to sort this out, and why has it not happened by now?

Inquiring minds would really like to know. It is getting to be annoying!

David.

NEHTA Needs to Follow This Example – Or Something Like It!

Canadian Infoway released this a few days ago.

Industry leaders form task force to align on electronic health record standards

May 1, 2008 - Focused on the acceleration of electronic health records, industry leaders from Canada Health Infoway (Infoway), Canadian Healthcare Information Technology Trade Association (CHITTA, the Health Division of Information Technology Association of Canada (ITAC)), and the Association of Health Technology Industry (AITS) announced today they have formed a task force to accelerate and promote the transition to a new set of pan-Canadian health information technology standards.

The task force will collaboratively work to promote the adoption of pan-Canadian standards, especially with point of service systems, by engaging clinicians, health care providers and vendors. Involving these stakeholders will support the planning required to ensure the interoperable electronic health record (iEHR) is leveraged and the adoption of pan-Canadian standards is accelerated.

"Time and again, we have seen the success of industries like the financial and consumer sectors drive faster end-user adoption through the implementation of standards," said Dennis Giokas, Chief Technology Officer, Canada Health Infoway. "With the aligned direction of our industry partners we can now work collaboratively to accelerate the deployment and use of these interoperability standards for the benefit of Canadians and the Canadian health care system."

Common standards are an integral element of, and a key requirement for, the establishment of a pan-Canadian interoperable electronic health record. Significant cost savings and quality improvements are achieved when custom integration is eliminated. Patients, clinicians and health service delivery organizations all benefit when data can be reliably shared across health care systems.

"We have been building health care systems using industry standards for over 20 years. Achieving full adoption of the pan-Canadian standards, and realizing the benefit of Canada's health infrastructure investments, is a multi-year journey until new products emerge and legacy systems are retired," said Brendan Seaton, President, CHITTA, the Health Division of Information Technology Association of Canada (ITAC). "Health information systems tend to be stable, so we will see a period where both existing and new standards are supported. We look forward to collaborating with health providers and Canada Health Infoway on developing solutions for this transition."

To enable the successful deployment of interoperable electronic health record solutions, the organizations support the use of: HL7 and DICOM for messaging, LOINC® and SNOMED CT® for terminologies, HL7's Clinical Document Architecture (CDA) for documents, HL7's Clinical Context Object Workgroup (CCOW) specification for clinical context management, as well as the pan-Canadian interoperability profiles.

"The transition to common, pan-Canadian standards allows us to achieve the highest quality in an interoperable electronic health record system. As an industry we are starting to see market demand for these new standards, and our members are making commitments to meet that demand. Success will come when we work together on this very complex challenge," said Daniel Laplante, Executive Director, AITS.

Canada is a strong contributor to the global acceleration of EHR standards through its unique collaboration model. Launched in 2006, the Standards Collaborative provides coordination, implementation, support, education, conformance and maintenance of electronic health record standards in Canada. One third of its members are representatives from health information technology companies.

About Infoway

Infoway is an independent, not-for-profit organization funded by the Federal government. Infoway jointly invests with every province and territory to accelerate the development and adoption of electronic health record projects in Canada. Fully respecting patient confidentiality, these secure systems will provide clinicians and patients with the information they need to better support safe care decisions and manage their own health. Accessing this vital information quickly will help foster a more modern and sustainable health care system for all Canadians.

About CHITTA

CHITTA, the Canadian Health Information Technology Trade Association, is the Health Division of ITAC, the Information Technology Association of Canada. CHITTA represents more than 120 companies across Canada that provide information and communications technology (ICT) products and services to the health sector. CHITTA represents the Industry to governments and health care decision-makers for the purposes of building a strong and sustainable health ICT industry in Canada, promoting investment in health ICT, and ensuring the interoperability of health ICT systems.

About AITS

Created in 1987 and representing over 100 members, the Association of health technologies industry's (AITS) mission is to stimulate the development of the health technologies industry and to promote its economic and social value. AITS is a meeting place for exchanges between partners on domestic and foreign markets.

The press release is found here.

http://www.infoway-inforoute.ca/en/News-Events/InTheNews_long.aspx?UID=315

While being more than prepared to admit getting together the various actors in the Canadian e-Health space might be a bit on the late side the same is certainly true in Australia.

With the departure of the old NEHTA CEO there is a space where an initiative of this sort – involving the various relevant actors would make a huge practical difference.

From all I am hearing the new Acting CEO is likely to see the sense in taking steps to seriously re-engage and to re-build. We can all do without a repeat of the ‘old NEHTA’ style of engagement (and the associated angst) It would good make sense that a new initiative would involve different people to lead the engagement process, from the NEHTA side, to make it clear change – as was identified as being needed by the BCG report – as actually on foot.

What might be a good idea is a mini 2020 style summit where all the actors get together and consider the papers produced by HISA, the Coalition for e-Health (CeH), AHHA and so on to devise a pragmatic, practical way forward.

The membership of the CeH is very broad and so it would form an ideal engagement conduit.

Members include:

Consumers & Patients

Cancer Voices

Choice - Australian Consumers Association

Consumers' Health Forum of Australia

Leukaemia Foundation of Australia

NSW Cancer Council

Health Colleges, Societies & Associations

AAPP - Australian Association of Pathology Practices

AACB - Australian Association of Clinical Biochemists

ACHI - Australian College of Health Informatics

ACHSE - Australian College of Health Service Executives

ACRRM - Australian College of Rural and Remote Medicine

ADIA - Australian Diagnostic Industry Association

AGPN - Australian General Practice Network

AHHA - Australian Healthcare and Hospital Association

AMA - Australian Medical Association

ASM - Australian Society of Microbiology

APS - Australian Psychology Society

HIMAA - Health Information Managers Association Australia

NCOPP - National Coalition of Public Pathology

RACGP - Royal Australian College of General Practitioners

RACMA - Royal Australian College of Medical Administrators

RANZCR - Royal Australian New Zealand College of Radiology

RCNA - Royal College of Nursing Australia

RCPA - Royal College of Pathologists of Australasia

Informatics Societies, Associations & Research Units

ACS - Australian Computer Society

AEEMA - The Australian Electrical and Electronic Manufacturers' Association

AIIA -Australian Information Industry Association

ANCC EH - Australian National Consultative Committee on e-Health

CSIRO

Engineers Australia

HISA - Health Informatics Society of Australia

HIPS - Health Information Privacy & Security

MSIA - Medical Software Industry Association

Melbourne University

Monash University

NIA - Nursing Informatics Australia

Sydney University

University of NSW

Standards Development & Testing Organisations

AHML - Australian Healthcare Messaging Laboratory

ACHS - Australian Council on Healthcare Standards

HL7 Australia

IHE - Integrating the Health Enterprise

OpenEHR

Standards Australia

National Pathology Accreditation Advisory Council

For all our sakes we need effective engagement between the Standards providers and the Standards users that means each gets what is needed out of the work the other does to the benefit of all.

A no brainer really – and way too long coming. The time is now right and I believe the stars are aligned!

David.

Useful and Interesting Health IT Links from the Last Week – 04/05/2008

Again, in the last week, I have come across a few reports and news items which are worth passing on.

These include first:

Brailer's Health Evolution Partners makes its first investment

By Bernie Monegain, Editor 04/28/08

Health Evolution Partners, the investment management firm founded by the nation's former national healthcare information technology chief, has made its first investment - an undisclosed amount - in e-prescribing company Prematics.

As a result of the funding, David J. Brailer, MD, will join Prematics board of directors.

Brailer, founded Health Evolution Partners in 2007 after he resigned from his post as national coordinator for healthcare information technology, appointed by President Bush.

Health Evolution Partners Innovation Network (HEPIN) led the Series B round of funding.

"The time is right for investing in electronic prescribing," Brailer said. "We looked at numerous ways for Health Evolution Partners to enter this market, and Prematics was by far the best choice. We have committed the financial resources and expertise that Prematics needs to be the nation's leading electronic prescribing company."

More here:

http://www.healthcareitnews.com/story.cms?id=9112

A report on the value and utility of e-prescribing is found here:

http://www.healthevolutionpartners.com/eprescribing_Outlook_0428.pdf

It is interesting to the Dr David Brailer invest in e-prescribing. He clearly thinks these approaches have a big future.

Second we have:

Patient identifier key to health system reform

29-Apr-2008

By Megan Howe

The development of a unique patient identifier is absolutely essential to achieve successful reform of the Australian health system, according to a peak lobby group, which claims the government’s e-health body is floundering.

Releasing three position papers calling for wide-ranging reform of the health system, the Australian Healthcare and Hospitals Association (AHHA) said a unique patient identifier was the “most important undertaking which underpins all other recommendations, requiring immediate implementation”.

AHHA policy project officer Ms Cydde Miller said privacy concerns about the patient identifier needed to be addressed, but without its introduction, reform was impossible.

“We can’t do large-scale population health analysis and find out what is going on with the health of Australians [without it],” she said.

“People are mobile and to have one national patient identifier will reduce the amount of work clinicians do because they can go into the system and get a full medical history from everyone.”

The association criticised the government body charged with developing the nation’s e-health system, the National E-Health Transition Authority (NEHTA).

“The AHHA is concerned that progress in Australia on improving information within and about the health system has been waylaid by a lack of focus and direction in the national work program led by NEHTA. Due to a range of impeding factors, this process is struggling to maintain the engagement of all necessary partners in such a significant undertaking,” it stated.

Continue reading here if you have access:

http://www.australiandoctor.com.au/articles/fb/0c055ffb.asp

It is good to see the professional press picking up some e-Health suggestions. The full documentation is found here:

http://www.aushealthcare.com.au/publications/publications_by_group.asp?id=3

Third we have:

Austin Health completes phase one of rollout under HealthSmart program

System currently used by 400 staff

Sandra Rossi 30/04/2008 12:29:56

Victorian health care provider, Austin Health, has just completed phase one of a HR rostering and payroll system that has reducing processing time by 70 per cent.

The workforce planning and management system, which was first piloted last year and is currently being used by 400 employees, is being rolled out under the Victoria government's HealthSmart program.

This system will be integrated with other HealthSmart systems across the state.

The standardised platform from Kronis Incorporated provides award interpretation, time and attendance, employee pay conditions and rostering.

In coming weeks Austin Health will begin the second phase of the project to automate roster generation.

The generation process will take into account both employee requests and skills to meet clinical and patient care requirements.

Austin Health's HR systems project manager, Leslie Bell, said the system reduces the amount of time taken by line managers to prepare and manage rosters and by payroll staff to process pay.

"The system has reduced the time required to enter the data for payroll processing by 70 per cent, and reduced the errors and warnings by delivering accuracy in excess of 99.5 per cent, which was unheard of previously," Bell said.

"All the payments made to employees in the pilot areas have been checked and verified, with the system exceeding expectations."

More here:

http://www.computerworld.com.au/index.php?id=1855751830&eid=-6787

It is good to see HealthSMART is having some success. Of course it is very early to claim success with only 400 staff being paid by the system – given the number of staff in the Victorian Health System. As an example there are 6,000 doctors and 30,000 nurses in the Vic Public Health System. Again, while important, we see success with administrative systems when what is really needed is clinical system success.

Fourthly we have:

Hospital worker 'sold celeb details'

From correspondents in Los Angeles

April 30, 2008 08:51am

Article from: Agence France-Presse

US federal prosecutors have charged a former employee of a Los Angeles hospital over selling information from celebrities' medical files to the media.

Lawanda Jackson, 49, was an administrator at UCLA Medical Centre, which recently announced it had taken action against several staff for peeking at the private records of singer Britney Spears and actress Farrah Fawcett.

She was indicted on April 9 for "accessing the private medical records of celebrity patients at the UCLA Medical Centre and selling information obtained from those files to a national media outlet," the prosecutor's office said.

More here:

http://www.news.com.au/story/0,23599,23621512-23109,00.html

Good to see such behaviour is taken seriously in the US. We must be alert to make sure there are sufficient disincentives in place in Australia as well.

Fifth we have:

Cancer Council drops legal action

By Drew Cratchley and Rosemary Desmond

April 28, 2008 05:19pm

Article from: AAP

THE fight against cancer in Queensland is set to benefit after the Cancer Council Queensland and the State Government ended a dispute over access to case records.

The council announced today it was dropping a Supreme Court action it launched earlier this month against Queensland Health in which it sought routine access for researchers to statistics from the Queensland Cancer Registry.

The Council wanted better access for researchers to analyse data and assess the effectiveness of cancer screening and prevention programs. The Government had resisted the request due to concern over possible breaches of patient privacy.

But last week Queensland Health Minister Stephen Robertson said the Government had received updated legal advice that the release of the information would not breach the Public Health Act.

More here:

http://www.news.com.au/story/0,23599,23610935-29277,00.html

It is good to see this silliness resolved with sanity prevailing.

Sixth we have:

How Personal Health Records Could Make Care Less Efficient

Posted by Jacob Goldstein

High hopes are afoot for personal health records, online homes where patients can store their medical information to take from doctor to doctor and keep track of things like prescriptions and test results. Microsoft and Google, among others, are jumping in the patient-controlled record pool.

But on a visit to Health Blog HQ yesterday, Steve Leiber — who runs Healthcare Information and Management Systems Society, the trade group for health IT — pointed out a potential downside to the patient-centric records.

“Physicians aren’t going to trust it,” he said.

That could be trouble if patients opt for the personal records and try (because of privacy concerns, say) to keep their medical information off of a doctor or hospital’s electronic medical record.

Patients could show up and hand over their memory stick or a Internet address for the files, but doctors on the receiving end might be wary of believing what the records says. “It’s outside a protected chain,” Leiber says. “The second doctors are going to repeat those tests.”

Still, he said, there are potential benefits to the approach. Many trips to the emergency room would go much more smoothly if the patient or a family member could direct the ER staff to a record that lists a patient’s allergies and current meds.

And they could work as a complement to (rather than substitute for) electronic medical records kept by doctors and hospitals. “I see you’ve been seen for X,” a doctor might say to a patient after reviewing his or her personal electronic files, Lieber said. “May I contact this practitioner [to get your medical record]?”

Continue reading here:

http://blogs.wsj.com/health/2008/04/25/how-personal-health-records-could-make-care-less-efficient/?mod=WSJBlog

This blog triggered a useful set of comments that are well worth reading by those interested in the potential of the PHR.

Last we have:

Technology that saves children's lives

Teleconferencing paired with medical diagnostic equipment helps save children's lives worldwide

Mary K. Pratt 29/04/2008 09:38:24

Frank Brady expects to celebrate a significant milestone in June: His Medical Missions for Children charity will treat its 30,000th child that month.

That's an impressive record for the nine-year-old nonprofit organization, which connects leading US doctors with doctors and their pediatric patients all over the world.

MMC uses telecommunications technology and other IT tools to bridge gaps in knowledge, treatment and geography. The organization has created what it calls the Global Telemedicine & Teaching Network to enable US-based doctors to consult with foreign pediatric physicians through a distance-medicine network called the Telemedicine Outreach Program so they can help diagnose and treat children worldwide. Technology also has allowed MMC to expand its services to include educational content for health care providers and patients in multiple countries.

"MMC fulfills a host of health- related needs throughout the world," says Alberto Salamanca, the Mexico-based president of MMC's Latin America region. "Technology has proven to be the most important tool to carry the mission and vision of MMC."

In some ways, Brady, 65, has spent his whole life readying himself for this mission. After he contracted spinal meningitis as a 1-year-old, the doctors told his parents that their son had only three weeks to live. But a week later, they suggested trying penicillin -- at the time, an experimental drug that hadn't been tested on pediatric patients.

The treatment worked, convincing Brady's mother that the boy was spared so he could do something special with his life. Brady's path thereafter wasn't unusual. He spent most of his 35-year career working in international business.

More here:

http://www.computerworld.com.au/index.php?id=929483641&eid=-255

This is a heart-warming story to start the week with. Good to see some real successes with telemedicine and good to see how some initiative can have it happen. Well worth a read!

More next week.

David.

The Risks of the Cut and Paste!

This interesting editorial appeared in the recently.

Electronic records prone to error, docs write in New England Journal of Medicine

By Bernie Monegain, Editor 04/17/08

Electronic health records could be a tool for perpetuating errors, warn two Harvard physicians in an article published Thursday in the New England Journal of Medicine.

The physicians urge their colleagues to take an unvarnished look at EHRs even as they are championed by President Bush and companies like Microsoft and Google.

The article, written by Pamela Hartzband, MD, and Jerome Groupman, MD, who both work at Beth Israel Deaconess Medical Center in Boston and teach at Harvard Medical School, outlines the pitfalls of using electronic records. It is published along with other articles on EHRs.

One of the major problems with EHRs, the authors say, is that they invite users to cut and paste information. While some information has to be repeated, and cutting and pasting can seem efficient, it also can compromise accuracy.

"Many times, physicians have clearly cut and pasted large blocks of text, or even complete notes, from other physicians; we have seen portions of our own notes inserted verbatim into another doctor's note," the authors write. "This is, in essence, a form of clinical plagiarism with potentially deleterious consequences for the patient. "

The impetus for this type of wholesale cutting and pasting into the record is usually to pass scrutiny for billing, they say.

More here:

http://www.healthcareitnews.com/story.cms?id=9081

On the basis that many readers will have access to the full text – the reference is as follows.

Off the Record — Avoiding the Pitfalls of Going Electronic. Pamela Hartzband, M.D., and Jerome Groopman, M.D. New England Journal of Medicine Volume 358:1656-1658 April 17, 2008 Number 16.

One really has to worry about some editorialists.

It seems pretty clear to me what their main concern is that some clinicians will use the technology to create unreliable and un-thought through clinical notes.

Well I have some news for them. In the old days of written records there was widespread use of both clinical note templates – of the type being cited here - and the widespread use of abbreviations and shortcuts to minimise the effort of note taking and record keeping. It was just as possible then as now to keep the mind in neutral.

There is nothing new under the sun as the saying goes.

As an example, it was always a toss-up as to whether the widely used abbreviation N.A.D. meant No Abnormality Detected or Not Actually Done!

The solution here, as it is in so many other situations, is education combined with basic common sense and a recognition that in-accurate documentation is a risk to both the patient and the clinician’s career.

This editorial would have been greatly improved by an emphasis on clinical responsibility in record keeping rather than being a whinge about the misuse of ‘cut and paste’!

David.

A Few of the Wrinkles of the Shared Electronic Health Record.

A really interesting article and more than one useful comment came to my attention a few days ago. The topic was an issue close the heart of your blogger – just how complex and hard it might be to make a shared EHR actually work in the real world.

Does Lorenzo mean the end of GP electronic patient records?

15 Apr 2008

GP computing has been one of the great success stories in patient care and the use of IT in the NHS.

Since its earnest start in the early 1980s, GP records have gone from paper based narratives held in A5 Lloyd George envelopes to fully interactive records, capable of handling the complexities of modern patient care, including the Quality and Outcome Framework (QoF) used for performance related pay and its central reporting mechanism, Quality Management and Analysis System (QMAS).

Without the universal use of electronic GP records throughout the UK, neither the targets introduced in 1990, nor the 2003 new General Medical Services contract, would have been achievable.

In the North, Midlands and East (NME), the area where Computer Sciences Corporation (CSC) is the Local Service Provider (LSP) under the National Program for IT (NPfIT), CSC is planning to introduce Lorenzo, which is understood to incorporate GP records, by 2010.

At present, CSC are supporting TPP SystemOne as their official alternative GP solution, with a view to incorporating it fully into Lorenzo by 2010.

Managing shared records

A great deal has been written about access to medical records held centrally, including the Summary Care Record (SCR) and the risks of unauthorised access. However, as far as I am aware, little or no attention has been paid to the management of the record itself. Has full consideration been given to the management of how such shared records should be arranged?

Lorenzo is planned as an early manifestation of the SSEPR (Single Shared Electronic Patient Record), defined as “a single electronic patient record for each individual patient used by, and contributed to by, all the organisations caring for that patient”, and scheduled to be introduced within two years.

Regardless of the access controls (and who controls access permissions), there are problems in managing a SSEPR which should concern everyone – and for which at present, I believe, no-one is claiming responsibility.

According to board minutes, Yorkshire and the Humber SHA is currently introducing a new shared record system to local NHS organisations, using a GP system with an integrated community module. The approach used within the TPP SystmOne SSEPR is understood to only let records be amended by whoever made the original entry.

The rationale for this is that the record also belongs to the organisations outside the general practice and only the organisation making the entry can change it: GPs can alter GP entries, community can change community entries and so on.

But using shared records that can only be amended by the service that made the original entry may present some worrying hazards.

Take the example of the patient who is sent to chiropody and returns with a diagnosis of diabetes mellitus, which the GP knows to be wrong; the entry on the records can then only be amended by the service that made the wrong diagnosis originally.

Currently Diabetes Mellitus gets picked up quickly thanks to the searches developed for QOF, and it is expected that patients with the diagnosis have the disease and should be managed appropriately.

Much more (and at least 8 comments) here:

http://www.ehiprimarycare.com/comment_and_analysis/309/does_lorenzo_mean_the_end_of_gp_electronic_patient_records_tcq

This is really a very important discussion as it raises the complexities and questions that sit beside the choice to develop a Shared EHR.

Among these questions are:

1. Does it make sense to deploy a Single Shared EHR (SSEHR) with all the patient information held in a single record – or is it more sensible to share just extracts as envisaged in HealthConnect? As soon as you go down the latter path you face the question of what data you hold where and how access to the detail is controlled.

2. Who is the owner of the record given it is built up from the contributions of many? This then leads on to all the questions about who can edit, change etc and how much trust can be placed in the record. There are also real medico-legal issues that arise as soon as any actual editing of the record becomes possible – if indeed it is permitted.

3.What access should each professional class have to the information in the record. Is there any value in having the pharmacist know about an abortion that was carried out 30 years ago?

4. Who has full access to the record – sealed containers and all. The GP, the patient, relevant specialists or who?

5. What access is the patient to have to the record and under what circumstances should information be held but not disclosed to the patient.

6. If sealed containers are to be permitted – are they totally invisible to others – or are they flagged as existing with a note to contact the individual authorised to open them? This goes to the issue of trust in the completeness of the record.

7. With virtually all EHR’s having considerable amounts of free text, how can highly sensitive, but un-coded information, be properly protected with any consistency.

8. Is there a good benefits case for sharing any more than a basic Continuity of Care record – at the very least in the first instance. Seems to me it makes sense to learn to walk before on tries to run!

These and many other issues are raised in the article and the comments. All worth a very careful read.

Until sound workable policy and work practices can be developed to address ALL these issues we need to hasten slowly down this road in my view. The time to address these issues is earlier than later in the Shared EHR development process. NEHTA are you listening?

David.

Personal Health Records (PHR) hitting the Big Time!

There is a sudden burst of activity it seems on the PHR front!

We have first:

Empowering consumers with their health records

Canada to take a close look at PHRs

April 17, 2008 - As the Internet has enabled consumers to manage important aspects of their personal lives from the relative comfort of their home, it is no surprise that Canadians are becoming increasingly intrigued by the prospect of being able to view and manage their health information using emerging personal health records (PHR) technologies.

Recent announcements by major players in the IT industry suggest such capabilities are just around the corner. Recognizing developments in this area are moving quickly, Canada's federal, provincial and territorial health ministries have expressed support for Canada Health Infoway's (Infoway) plan to discuss personal health record solutions with interested vendors and to explore how these technologies could be made available to Canadians in a secure manner.

"Providing Canadians and their health care providers with appropriate and secure access to their health information has been our goal from the onset," said Richard Alvarez, President and CEO of Canada Health Infoway, the federally-funded, independent, not-for-profit organization that is leading the adoption of electronic health records across Canada. "The prospect of seeing consumer health solutions in the Canadian marketplace is an exciting development indeed. It is also critical that we ensure these offerings provide the appropriate level of trust, protecting the privacy and security of Canadians' health information."

"The Government of Canada, through its funding of Infoway, is investing in the national transition from paper to electronic health records," said the Honourable Tony Clement, Federal Minister of Health. "I am pleased that personal health record solutions will complement and leverage our investments to date in e-health solutions. With the appropriate ground work in place, PHRs will ultimately deliver greater value to Canadian patients."

"Canadians are taking increasingly active roles in managing their chronic diseases and preventing illness from setting in," said Chris d'Entremont, Minister of Health for Nova Scotia, who serves as the liaison minister between Infoway and federal, provincial and territorial health ministers. "Our investments in the implementation of electronic health records are crucial to our goal of ensuring Canadians have access to the information and tools they need to manage their care. The onset of personal health record solutions can accelerate our desire to enable patients to have these capabilities."

A number of technology vendors have expressed interest in creating solutions that will equip Canadians with the technology they need to view their medical data. Working with Infoway and its partners will help ensure the solutions available to Canadians will leverage the progress made in implementing electronic health record projects across Canada. Using technology solutions that are compatible with Infoway's blueprint will ensure patient privacy and security provisions are adhered to.

More here:

http://www.infoway-inforoute.ca/en/News-Events/InTheNews_long.aspx?UID=313

And

Warning on Storage of Health Records

By STEVE LOHR

In an article in The New England Journal of Medicine, two leading researchers warn that the entry of big companies like Microsoft and Google into the field of personal health records could drastically alter the practice of clinical research and raise new challenges to the privacy of patient records.

The authors, Dr. Kenneth D. Mandl and Dr. Isaac S. Kohane, are longtime proponents of the benefits of electronic patient records to improve care and help individuals make smarter health decisions.

But their concern, stated in the article published Wednesday and in an interview, is that the medical profession and policy makers have not begun to grapple with the implications of companies like Microsoft and Google becoming the hosts for vast stores of patient information.

The arrival of these new corporate entrants, the authors write, promises to bring “a seismic change” in the control and stewardship of patient information.

Today, most patient records remain within the health system — in doctors’ offices, hospitals, clinics, health maintenance organizations and pharmacy networks. Federal regulations govern how personal information can be shared among health institutions and insurers, and the rules restrict how such information can be mined for medical research. One requirement is that researchers have no access to individual patients’ identities.

…..

The authors say that consumer control of personal data under the new, unregulated Web systems could open the door to all kinds of marketing and false advertising from parties eager for valuable patient information.

Despite their warnings, Dr. Mandl and Dr. Kohane are enthusiastic about the potential benefits of Web-based personal health records, including a patient population of better-informed, more personally responsible health consumers.

…..

Peter Neupert, the vice president in charge of Microsoft’s health group, said that he admired the authors and that they raised some important issues. But he resisted the suggestion of extending Hipaa to newcomers like Microsoft and Google.

“Philosophically and politically, I am skeptical of the concept of paternalism,” Mr. Neupert said in an e-mail response to the article, which he was sent, and to the authors’ comments. “It never turns out to be ‘limited.’ ”

…..

Dr. Mandl and Dr. Kohane are physicians and researchers at Children’s Hospital Boston, the primary pediatric teaching hospital of the Harvard Medical School.

Read the full article here:

http://www.nytimes.com/2008/04/17/business/17record.html?_r=2&scp=10&sq=health+care&st=nyt&oref=slogin&oref=slogin

And

Feds lay groundwork for PHR adoption

By Diana Manos, Senior Editor 04/16/08

Members of a federal healthcare IT advisory panel workgroup considered recommendations Tuesday from the Centers for Disease Control and Prevention on how best to push personal health records.

CDC is one of the few federal agencies making headway in using the Internet in all its various forms to promote health messages.

…..

Federal efforts to promote PHRs should include working with PHR providers to find out the current level of satisfaction, as well as gathering quantitative data on performance through formal user testing, Nall said.

In addition, the CDC recommended that AHIC should:

• conduct research to determine the health impact of PHRs;

• determine who is actually using PHRs;

• use social media, or interactive online methods, to engage existing and potential PHR users;

• test PHR promotion plans on blogs to find out public reaction;

• establish a panel of social media leaders, PHR providers and marketing leaders to work on the promotion plan;

• and engage stakeholders early in process.

Nall said she will run CDC's recommendations through several top healthcare blogs to get public feedback prior to the workgroup's next meeting.

Workgroup Co-Chairman Anne-Marie Robertson said the group is charged with encouraging the uptake of PHRs well into the future. She recognized there is "a huge amount of work going on as major players in the industry are engaging in building PHRs and trying to market them. " She was uncertain as to whether AHIC should conduct its own market research.

…..

Read full article here:

http://www.healthcareitnews.com/story.cms?id=9077

It seems clear from all this activity – with all this appearing in a single week – the idea of PHRs is really taking off and being actively discussed and thought through.

The 2020 Summit HealthBook proposal is a reasonable first thought – but more flesh is needed on these bones, and as I said recently we don’t want to reinvent any wheels here. There are a huge number of variations on the theme out there!

To me a core issue is how much PHR and how much social networking is the right mix in a HealtBook. Both technologies seem to have transformative capabilities – it will be interesting indeed to see how things evolve.

One of the things the 2020 Summit should have addressed is how the use Medicare Australia’s databases to start such things in Australia. I wonder did someone raise the idea?

David.

Healthbook - An Idea Whose Time has Come?

In an amazing co-incidence just a day or two after the 2020 Summit raised the idea of the Healthbook the following press release arrived.

Social Media's Challenge to Traditional Health Care

Patients, Providers, Researchers, and Advocates Forge Online Connections

April 22, 2008

Social media on the Internet are empowering, engaging, and educating health care consumers and providers, according to a new report, The Wisdom of Patients: Health Care Meets Online Social Media, published by the California HealthCare Foundation (CHCF). "Innovative collaborations online among groups of patients, medical professionals, and other health care players are challenging the notion that health care happens only between a single patient and doctor in an exam room," said report author Jane Sarasohn-Kahn, M.A., M.H.S.A., a health economist, management consultant, and health blogger. "This movement is known as Health 2.0."

The Emerging Role of the Internet in Health Care

"The Internet plays a central role in finding health information," said Veenu Aulakh, M.P.H., CHCF senior program officer. "More consumers now go online for health information and support than consult their physicians. The Web is also becoming a platform for convening people with shared concerns and creating health information that is more relevant to consumers. CHCF is exploring the use of social media as a tool to help people manage chronic conditions." Social media include online communities, blogs, videos, wikis, and other formats for sharing information.

The role of the Web has evolved from the information-retrieval of "Web 1.0" to "Web 2.0," which allows people who are not necessarily technologically savvy to generate content. At the same time, social networks ranging from MySpace to specific disease-oriented sites are blossoming. According to the report, social networks in health are proliferating so rapidly that new services are already under development to help health consumers navigate through them.

"Consumers are well ahead of other health stakeholders in adopting social media in health," said Sarasohn-Kahn. "People with chronic conditions are sharing their stories with each other, not just for emotional support, but for the clinical knowledge they gain in an online community. Doctors are meeting online to share quandaries about challenging cases and solutions that work. And researchers are coming together with patients to learn about side effects in real-time to improve therapeutic regimens."

Examples of Health 2.0 Sites

Among the Health 2.0 sites discussed in the CHCF report is DiabetesMine, a blog started by a journalist with adult-onset Type 1 diabetes. Her target audience is people with diabetes, caregivers, providers, payers, and the health care industry. Another site is PatientsLikeMe, a social health network and online forum. The target audience is patients with ALS (amyotrophic lateral sclerosis), multiple sclerosis, Parkinson's disease, or HIV/AIDS, as well as related caregivers, providers, and researchers. People share personal data on prescription drug histories, side effects, and what works in managing their conditions. Its patient-reported dataset has been presented at scientific meetings and used in peer-reviewed research. Another site, WEGO Health, is a social health network and wiki. The target audience is "prosumers" (expert consumers) who want to dig deeper and with more specificity into health topics. For example, someone could search for videos about diet and lifestyle changes among African Americans with Type 2 diabetes.

In addition to specialized sites, more than 500 groups meet on Facebook to discuss diabetes; more than 2,000 chemotherapy-related photos are posted on Flickr; and some 36,000 YouTube pages are devoted to some aspect of surgery. And that is just a sample of the kind of interactive media related to health that exist for patients online.

Can the Sites Be Trusted?

The CHCF report examines the benefits and concerns regarding Health 2.0. While privacy concerns may prevent potential users from getting involved, the report notes that people in search of health information and support are often willing to trade off aspects of their privacy in exchange for valuable services, as long as the sites clearly state how personal health information is used. The report points out criticisms that content provided by non-expert individuals could lead to adverse effects or even death, while noting that social media proponents contend that misinformation doesn't remain posted for long, and that collective wisdom is, by its nature, self-correcting.

Are Social Media Sustainable and What Comes Next?

The report describes various Health 2.0 business models (such as data aggregation and sharing; information arbitrage; advertising; sponsorship; and integration into health care delivery systems) that offer the potential to make sites sustainable.

According to the report, the growing demand for transparency will drive the evolution of social media in health. Sarasohn-Kahn writes that "shining a light on the data by which payers and consumers make purchasing decisions can help drive more rational, cost-effective choices." She offers as examples new sites the combine consumer reviews, peer reviews, and empirical data on a doctor's quality. Another example is a new health plan model that claims to be the health equivalent of Travelocity. "Consumer-generated content in health has found a receptive audience in Web 2.0," said Sarasohn-Kahn. "Patient opinion leaders have emerged in many disease areas. They will become a key influence on other consumers and, increasingly, the organizations who serve them."

Additional Social Media and Health Resources

The report includes brief portraits of social media health pioneers. It also provides an extensive list of resources on Health 2.0, health social networks, health wikis, patient blogs, health podcasts, and health video-sharing sites.

Contact Information

Marcy Kates
California HealthCare Foundation

510.587.3162

The press release is found here:

http://www.chcf.org/press/view.cfm?itemID=133633

The full report can be downloaded from this page

The Wisdom of Patients: Health Care Meets Online Social Media

The full report is really well worth a download an browse – only being about 30 pages and having a useful bibliography and list of sites to visit.

The issue with the 2020 Healthbook proposal at this point is the lack of clarity with the proposal. All we have from the preliminary report is the following:

“Create a "Healthbook" (like Facebook) for Australians to take greater ownership of their health information and electronically share it with people they trust – for example their doctor, nurse or family members. Users could control their health “friends” and their level of access, share data as desired, and ask for real time advice on health issues. By 2020, this might include sharing your own genetic data with your doctor or family. This would put the individual squarely at the centre of the health system.”

Clearly the next step is to consider the various forms of social networking and the various forms of Personal Health Records and determine just what might be the best to keep the patient in the centre while involving the professionals and other more formal information sources e.g. Medicare Australia, Pathology labs and so on.

The issue could certainly, and should in my view, be considered as part of the development of the National E-Health Strategy.

Tomorrow a little more on the more standard PHRs.

David.