Talking About Health- Praten Over Gezondheid

The Netherlands

01-02-2011

The main aim of this project is providing essential information to dementia patients and their carers by creating a website based on other patients and carers’ experiences and perceived needs that can orient people and help them make decisions.

 

The purpose of the website is to:

- provide information on how it is to live with dementia;

- provide support;

- assist in making difficult decisions.

Praten Over Gezondheid was developed in response to its British example Healthtalkonline, as the two experiences share the belief that talking with others about illness can help find possible solutions and overcome difficulties. The difference between this Dutch experience and the British one is that the former covers only the issue of dementia and the latter includes many disability-related items as well.

 Care Recipients
 Informal carers
 Paid assistants
 Formal carers

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 Independent Living
 Information and learning for carers
 Personal Support and Social Integration for carer
 Care coordination

The website provides interviews with informal carers of patients affected by dementia or other memory disorders.

On the website are available biographies of 36 people who were interviewed about their experiences with dementia. Eight people are still undiagnosed. They have problems with their memory and run through a diagnostic process in which is taken into account a dementia syndrome or mild cognitive impairment (MCI). Users can choose from one of the topics or view the biographies.

The initiative is based on rigorous qualitative research methodology and features an analysis of the 25 most important issues identified in the interviews and around 250 video, audio and written clips from the interviews. The links and resources sections are supplemented by the questions to which the interviewed persons would like to find answer and provide valid and trustworthy information about patients’ experiences.

Personal computer (tablet or smart phone) with internet connection.

Both public and private

Public service funding: Government, Regional, Local Authorities, non-profit public entities

The Dutch Government through the National Elderly Programme (NPO).

Public research funding: national funds for research, development and implementation of innovative initiatives though ZonMw-The Netherlands Organisation for Health Research and Development, that funds health and encourages the use of the knowledge to improve care and health.

 

Non-profit funding: charity, volunteers organisations, NGO

Not available

Not applicable

The initiative is sustained by grants for modules about other diseases and health problems. Applications were sent both at national and international level for this grant.

In every grant, application provisions are made for enabling the Fund to update the modules on the website, edit and distribute newsletters and answer email questions.

Future sustainability depends on the recognition of the value of project objectives, vision and methodology by public and research stakeholders at national and international level. In this respect could be helpful delivering an impact assessment document showing the positive effects on users (carers and patients), labour market and National Health System. In April 2014 funds were available to ensure maintaining the service for future1-1,5 years.

In the same period the UMCG presented three tenders for European Research Funding.

€ 50,000 - 500,000

€ 0 - 10,000

400,000€ to 500,000€ for building website, initial set up, development and research.

<10 000€ for continuation of (and updating) the website and preparing articles and new grants.

 Authorities
 Private Care Sector
 Health and Social Care Systems
 Third Sector
 Private Companies

The Royal Dutch Society for the Advancement of Medicine, the Dutch Public Health Federation, the Dutch Organisation for Health Research and Development, the European Public Health Association and the European Public Health Alliance.

Organisations from the Third Sector play a pivotal role in the project as they sustain activities practically and organise events for fund raising.

 Informal Carers
 Health Professionals
 Social Care Professionals
 Privately-Hired Care Assistants (inc. Migrant Care Workers)
 Volunteers

The project is coordinated by a team of sociologists and researchers who are in charge of selecting participants and analysing interviews contents.

Family, friends and surroundings provide insight into the person who is sick, who feels understood and accepted and then perceives him/herself in a more positive way. Care professionals, geriatricians, mental health professionals and paramedical personnel, provide insight into the experiences of patients and thus contribute to improving communication between healthcare professional and patient.

Volunteers are in charge of orienting future actions, disseminating data during study, and evaluating modules on the website.

1,001 - 5,000

Identifying the exact number of users is not easy, because it is a freely accessible website and it changes/increases every day.

The main promotion channel is the website but, as the project is sustained by many public and not for profit organizations, they use their own communication channels for promoting it. Furthermore, regular newsletters are sent out with the latest information.

The effects of the projects will be studied by the Health Experiences Research Group (HERG) of Oxford University – the group that developed the qualitative research methodology (called DIPEx – Database of Individual Patient Experiences). Germany, one of the members of DIPEx International – a consortium of 12 countries that use the same methodology (see www.dipexinternational.org) – also evaluated the effect on the quality of life. Praten Over Gezondheid planned to do the same using the e-Health Impact Questionnaire (a questionnaire developed by HERG to be used in different countries), but this evaluation has not be carried out so far, due to the recent project start up.

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Not available

Strengths

1. The project is based on a scientific and rigorous methodology.
2. The project helps integrate social and health services, bringing together all aspects of dementia.
3. The project involves organisations from public and private sector as well, connecting formal and informal human resources.
4. Privacy and anonymity are taken into great consideration. Participants are asked to fill in the informed consent and they can decide which parts of the interview may be on the website or not by signing the copyright form. The participant remains, however, in full control over their own data, as they can always withdraw consent and then all the data from the website are removed. This procedure has been developed in consultation with the Medical Ethical Committee of the University Medical Center Groningen.

Weaknesses

1. The website has not information in English and this could be a fault, in particular because Praten Over Gezondheid is connected with DIPEX International.
2. The lack of impact assessment for the evaluation of the effects of the service on end users, companies and National Health System.

Opportunities

1. Material from the modules will be used for education of (para)medical students, refresher courses, improving clinical pathways, etc.
2. The project has a national coverage but it is based on an international approach that could help transnational research project and comparative analysis.
3. In the future UMCG would like to set up a separate website where carers can find information on ICTs solution that can make their life easier (such as alarms and sensors) in collaboration with Small Medium Enterprises, getting a percentage of the sales in return to finance new modules.

Threats

1. The service is based on a rigorous research methodology providing qualitative data: this could be a problem for the fund raising among organisations financing the initiative, as they are often more impressed by effects quantifiable in terms of numbers and percentages than carers’ words and testimonials.
2. The lack of funding threatens the future sustainability of the service. It is hard to find additional resources for opening other modules, even if the coordinators are seeking to convince authorities and organisations (health insurance companies, ministries, local authorities, hospitals) that this kind of information should be the basis for a modern approach to health care in which patients can participate and share in decision making.

The project has already a national coverage. Even if the project is very young, as it started in June 2013, it has good chances for connecting with other contexts in other parts of Europe. Because it is part of the international group DIPEX.

Resources

The case study was integrated thanks to the collaboration of Mrs Auke Wiegersma, director Fund PratenOverGezondheid (NL) and deputy chair of DIPEx International, in April 2014.

Website: http://www.pratenovergezondheid.org/

The organisation: UMCG Research BV Fonds PratenOverGezondheid

Auke Wiegersma

E-mail: p.a.wiegersma@umcg.nl