A personal health care record (PHR) based on international open standards facilitates true patient empowerment

AUTHORS:

Verlinden SFF (1) and Freriks G (2)

INSTITUTION:

1 Vivici BV, Leiden, the Netherlands, 2 Conexis, Buitenkaag, the Netherlands

BACKGROUND:

True patient empowerment starts with the control over your own health data. The person who controls the data is primary responsible for the whole picture and can assure quality of treatments, services and care provided. Of course patients can delegate this responsibility to f.i. their family doctor. In that case an underlying ‘service level agreement’ should take care of the mutual expectations and responsibilities.
Traditionally patient records are generated, maintained and controlled by the individual health care providers. This results in fragmented bits of data stored somewhere in the office of the healthcare provider who generated it. Currently, at least in the Netherlands, most health care records are based on proprietary software, which doesn’t connect to open communication standards. As a result data isn’t shared between healthcare providers. Therefore no person has the complete picture, specifically the subject of all of this: the patient.

OBJECTIVE:

To provide a web based PHR that facilitates true patient empowerment, optimal patient care that allows plug and play interoperability.

METHODS:

A web based PHR is developed based on the international open standard CEN/ISO-13606(1) and the openEHR information model(2).
To guarantee privacy, medical and personal data are physically separated and controlled by different institutions. No data that can uniquely identify the patient is stored in the PHR. This and the fact that the secret key to connect an individual to a PHR is controlled by an independent organisation, guarantees the privacy. To enter and view data, archetypes(3) for each separate knowledge domain were created using the Archetype editor(4). Besides the demographic archetype, archetypes were created for actual disease/disorders and episodes, actual medication, length, weight, blood pressure, blood-glucose, cholesterol and vaccinations.

RESULTS:

Compliance to the CEN/ISO 13606 and use of the openEHR architecture provides ‘plug and play’ semantic interoperability. As integrated part the system generates a complete and detailed audit trail: every data entry point can be retrieved in its original context digitally undersigned by the responsible person.
The latter is crucial to address medico-legal issues such as responsibility. These issues will occur more and more in the near future when the (Dutch) government enforces ‘chain-care’ concepts that will force healthcare providers to use data generated by others.
After secure login via a webpage, patients and health care providers can enter and share health related data via a secure web portal that is available 24×7 through the Internet.

CONCLUSION:

Essential for true patient empowerment is control over your own healthcare data. Systems offering this control also should guarantee privacy, provide plug and play semantic interoperability and deal with medico-legal issues. An Internet based PHR is generated which, due to the fact that it complies with international open standards and information models (CEN/ISO 13606 and openEHR), meets these requirements.
Patients can enter, access and share their healthcare information safely with whom they chose and therefore take control over their own health.

REFERENCES:

1 http://www.centc251.org/TCMeet/doclist/TCdoc04/N04-012prEN13606-1_2WD.pdf
2 http://svn.openehr.org/specification/TRUNK/publishing/architecture/rm/ehr_im.pdf
3 http://www.deepthought.com.au/it/archetypes/Output/archetypesTOC.html
4 http://oceaninformatics.biz/archetype_editor/ArchetypeEditor_download.html

Oral presentation @ MedNet2007 Leipzig

Alles over bloeddruk

CONTACT: stef at vivici dot nl

Self-management of self-limiting diseases via a web-based communication system for digital triage in Primary Care

AUTHORS:
Van Gemert-Pijnen JEWC* 1 (j.vangemert-pijnen@gw.utwente.nl), Cranen K 2, Verlinden SSF 3, Boer H 1, Nijland N 1, Verhoeven F 1, Seydel ER 1

INSTITUTIONS:
1) University of Twente, Enschede, Netherlands 2) Roessingh Research & Development, Institute for Research in Rehabilitation Medicine and Technology, Enschede, Netherlands 3) Vivici Bv, Leiden, Netherlands

BACKGROUND:
Previous studies demonstrated that health care consumers favor web-based communication systems to control their own care (1). For these self-management services to succeed, web-based communication systems have to be tailored to the diversity of health consumers’ needs. The web-based communication system used encrypted software for secure exchange of information. Users had to log on with a user-ID password. The system required a pre-existing relationship between care consumers and caregivers, and was therefore a system with type B interactions (Bona fide relationship, (2)). The system offered the following types of facilities to care consumers: a) general health information via online brochures, b) a symptom driven digital triage system for self-care, that consisted of a dynamic questioning-and answering system. The digital triage system provided a self-care advice; it can be seen as a “computer consult”, c) a digital triage system combined with free-text (e-mail) to communicate with a GP (e-mail consult). In this paper we evaluated the digital triage system, or “computer consult” (b).
The symptom driven triage system (ISO 9000:2000 standards; certified TNO-QMIC) was developed with 25 ‘entry’ complaints based on the criteria: high frequency, no physical contact required to assess medical situation, and the possibility to rule out emergencies. Each complaint leads to a specific triage module. Information required to asses the specific health situation was gathered through a dynamic questionnaire, varying on gender, age, and answers on previous questions. Upon completion, the expert system assesses the urgency of the current health situation and provides an advice.
The consumers received an online form (computer generated) with a diagnose and an advice, based on the information gathered through the health compliant related questions-and-answers, and varying from “contact a doctor immediately” to a tailored self-care advice. We examined the compliance with care advices provided via the expert system, e.g., the digital triage part of the system.

OBJECTIVE:
To empower health consumers to control their health behavior and to facilitate primary care practice.

METHODS:
The frequencies of various complaints and the types of advice provided by the system were examined (during15 months, 2005) via retrospective analysis of complaints entered by 6.540 consumers. To determine factors influencing compliance with self-care advice a theory-based online survey (n=192) was carried out presented at the website. A follow-up questionnaire (n=35) was used for assessing the actual compliance with the advice (3 months period, 2006)

RESULTS:
Of the 6.540 consumers who started a digital consult, 59% (n=3785) completed it and received a care advice. The frequency of the clinical problems presented most was: cough (22.4%, n=848), dermatitis (13.9%, n=526), urinary complaints (11.6%, n=439), diarrhea (9.8%, n=371) and headache (8%, n=303). In 14% (n=543) of cases, a fully automated problem tailored self-care advice was provided. The vast majority (86%) received an advice to contact a doctor; within 24 hours (51%), 17% within 4 hours, and 14% within 1 hour. The attitude (p<0.001) towards the provided advice, the experienced confidence in the advice (p<0.001), and the judgment about the effectiveness of the provided advice (p<0.001) appeared to be significant predictors (predictive power 55%) of the intention to follow-up the advice. It appeared from the follow-up questionnaire that 57% of the 35 respondents actually complied with the given advice. Education (p<0.01), medication use (p<0.05), pre-existing plans to act on the advice (p<0.001), correspondence between expected and received advice (p<0.001) significantly influenced compliance.

CONCLUSION:
Digital triage promotes self-management of self-limiting diseases especially for chronic care patients, and consumers who have confidence in computer-generated advice and who planned to act on the advice. Therefore, web-based consultation can contribute to a more efficient primary care system, it facilitates the gatekeepers’ function. To promote web-based communication, further research is needed about factors that influence the efficiency and effectiveness of digital triage related to (non)compliance.

REFERENCES:
1. Moyer CA, et al., Bridging the electronic divide: Patient and provider perspectives on e-mail communication in primary care. Am J Manag Care 2002;8(5): 427–33.
2. Eysenbach G. Towards ethical guidelines for dealing with unsolicited health care consumer emails and giving teleadvice in the absence of a pre-existing health care consumer-physician relationship systematic review and expert survey. J Med Internet Res 2000 Jan-Mar;2(1):e1.

Oral presentation @ MedNet2007 Leipzig

Digital triage to discriminate medical complaints for which a general practitioner (GP) should be consulted from complaints for which a self-care advice can be given.

Authors:

Stef Verlinden, Vivici BV, Leiden, the Netherlands
Lisette van Gemert-Pijnen, University of Twente

Introduction:

On average every Dutch visits their GP 1,4 times a year for a new medical complaint. Among the most frequently presented complaints are cough, nasal congestion, throat complaints, low back pain, headache, neck/shoulder complaints and diarrhea. In more than 80% a self-care advice is given.
To support the GP’s the Dutch College of General Practitioners (NHG) has developed professional standards for telephone triage. Doctor assistants use these standards to determine whether a patient can come to visit the GP.

Objective:

To examine whether digital triage based on NHG standards can empower patients and promote self-management of self-limiting diseases.

Methods:

A symptom driven expert system was developed. Twenty-five ‘entry’ complaints were selected based on the following criteria: high frequency, no physical contact required to assess medical situation and the possibility to rule out emergency situations. The system was certified based on ISO 9000:2000 standards by an independent certification institute (TNO-QMIC).
Through a secure website the patient can enter the expert system by selecting the main complaint. Each complaint leads to a specific triage module. Information required to asses the specific situation is gathered through a dynamic questionnaire which is can vary on gender, age and the answer on the previous question. On top of that patients were asked to answer an additional 4-8 question about the service. Upon completion the expert system assesses the urgency of the current situation and provides an advice.
Those advices vary from ‘contact a doctor immediately’ to a self-care advice.

Results:

In a pilot study almost 2000 individuals used digital triage to assess their everyday medical complaints. 65.1% of the patients who started a digital consult completed it. Of them 52% answered the additional questions. Asked about their reason, 75,9% answered that they wanted to find out what to do with the complaint they had. Of those 81,5% originally planned to visit their GP for that complaint.
In 17,4% a self-care advice was provided. 79% of the patients who received a self-care advice indicated that they would follow the self-care advice first and postpone the planned visit to the GP.
89,1% rated the advice and information they received as good or better. 62,3% rated it as great or outstanding.
A follow up study in which the long-term effects are studied is on its way.

Discussion:

The system developed was able to perform automated digital triage for a specific group of everyday medical complaints. The high ratings suggest that patients are empowered by digital triage. The fact that a vast majority of the patients who received a self-care advice postponed their planned visit to their GP seems to support the idea that digital triage can be used to promote self-management of self-limiting diseases.
Further studies have to be conducted to value the potential role of digital triage in the primary health care process.

Oral presentation @ MedNet2006 Toronto