Healthtalkonline.org

UK

01-12-2011

The service aims:

1. To support patients and carers by allowing them to share their experiences of illness or health problems;
2. To support informed decision making by patients and carers by providing reliable, evidence-based information;
3. To be an educational resource for health care professionals;
4. To promote better communication between patients and health care professionals.

The Health Experience Research Group or ‘HERG’ at Oxford University’s Department of Primary Care Health Sciences are responsible for the research that appears on Healthtalkonline.org. The unique partnership between HERG (formerly The DIPEx Research Group) and the charity DIPEx, who maintain this website, began in 1999 when Drs Ann McPherson and Andrew Herxheimer had the idea to develop a website that would provide reliable information about ordinary people’s experiences of health and illness.

 Care Recipients
 Informal carers
 Paid assistants
 Formal carers

The main targets are patients, their informal carers (family members) and formal carers (such as doctors, nurses and other health professionals).

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

1. The site provides qualitative in depth interviews video recorded with informal carers of patients with different diseases, through which users can learn more about being carers and can be oriented in decision making. Two websites, (www.healthtalkonline.org and www.youthhealthtalk.org) contain 25,000 videos and 2,500 audio clips under different boxes, such as “People experience, Young People experience, Health Professionals’ experience”, and divided in categories/illnesses (such as autism or cancer). The questions that patients want answered are identified in the interviews with patients and summarised on the websites. 80 health related issues are covered and for each of them , 30-50 people were interviewed. Caring for someone with a terminal illness: 40 interviews about caring for someone with a terminal illness.
2. Carers of people with dementia: 31 interviews about caring for a person with dementia.
3. Interviews are also available in several languages for helping carares belonging to minor ethnic groups: Bengali (1 interview), Chinese (3 interviews), Gujurati (2 interviews), Punjabi (23 interv The research team uses qualitative research and interviews are collected systematically according with a method recommended by the NHS National Knowledge Service as the ‘gold standard’ for research into patient experiences. The team has been accredited with the Information Standard, the Department of Health's quality mark for health and social care information.

A personal computer with an internet connection.

Both public and private

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

Healthtalkonline is publically funded by the Department of Health, the National Institute for Health Research and the UK National Screening Committee and privately funded.

Other: please specify

Non-profit funding: charity, volunteers organisations, NGO

Private companies: donations

Healthtalkonline.org is run by DIPEx charity. It funding from other charities and individuals to keep the website going and promote the initiative.

DIPEx is used organise events for fund raising such as runs and triathlons: they 're currently looking for runners to take part in the British 10K in July 2014, that takes place in central London.

Furthermore, DIPEx is sustained by patrons such as famous actors, anchor men and University Professors and co-founders.

Due to its reputation and numerous financial supporters, the service’s long term sustainability is promising.

The service is sustained by several charities, private companies and Oxford University.

Speaking about Healthtalkonline, Sir Muir Gray, Director of the National Knowledge Service and Chief Knowledge Officer of the NHS, said: “The methods used by the Oxford Health Experiences Research Group have set the benchmark for research into health and illness experiences. So, also due to large amount of funders and their different nature, the service’s long term sustainability should be guaranteed.”

€ More than 500,000

£1.5 million (€1.8 million) for the set up.

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

Not available

DIPEx is the Oxford-based charity managing Healthtalkonline.org. The DIPEx Charity works in close partnership with HERG.

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

The initiative’s staff is composed of patrons, co-founders, Board of Trustees members, charity staff and HERG. Among the patrons there are actors, tv journalists university professors. The charity staff consists of managers from different businesses. Researchers from HERG are involved. The Board of Trustees is made of medical, television, business people and members of the health authority.

The DIPEX Board of Trustees meets quarterly and comprises a wide range of people with experience in charity governance, medicine, legal affairs and finance. The DIPEx Strategy Group brings together members of the charity and HERG to guide and give advice on research projects and priorities. It meets 2-3 times per year. A joint management committee meets more frequently to manage daily matters.

40-50 people are recruited, for each covered health issue, through GPs, hospital clinics, charities, support groups, via websites and the social media. Researchers pick out the main themes from the interviews and write detailed summaries, with examples from video and audio recordings. Each research project is supported by an advisory panel composed of people affected by the health issue, health professionals, academics and staff from relevant charities.

The information is gathered by volunteers, who are recruited through different channels including GPs and hospital consultants, support groups, newsletters, advertising in the press, on websites and by word of mouth. Doctors and nurses hand out recruitment packs (including a 'study information sheet', an introductory letter, a reply slip and stamped addressed envelope) to potential participants, who can get in touch with initiative coordinator if willing to hear more.
Sometimes people hear about the study and contact the service directly and they receive a pack to help them decide whether to take part or not.

1.500 users/year

Video interviews on the website.

This service could have a positive impact on the quality of life of:

- Informal carers, by providing tools to reconcile care and work, leading to an improvement in their social life and health. The service is appreciated and recommended by users to others (Newman et al., 2009)

Not available

Not available

Strengths:

1. Scaling up and transferring the service is planned.
2. The service is based on a scientific methodology.
3. The service helps integrate the social and health services.
4. The initiative is free for users. The service has received many of awards in the last ten years (see http://www.healthtalkonline.org/Overview/Awards_healthtalkonline)
5. HERG published over 60 articles since 2001.
6. The full interview collection is available to other researchers for secondary analyses.

Weaknesses:

1. Although the website contains a vast amount of information and is user-friendly, some older people without IT literacy might find it difficult to access the information they need.

Opportunities:

1. The web page Learning and Teaching (http://healthtalkonline.org/learning-teaching) presents around 25,000 video clips for more than 75 different health issues. The interviews are a great resource, for free, for teaching and training, as well as a tool to increase the number of target users.
2. DIPEx can be used as a resource in medical education (Ziebland &McPherson, 2006). For each interview, just a few extracts are chosen for publications on the website. Full sets of interviews (usually 35-50 per collection) and supporting documents are retained in the Health Experiences Research Group (HERG) archive. Interviews in the archive are all copyrighted to the University of Oxford and available, under license, to qualitative researchers for secondary analysis (subject to approval and administrative costs).

Threats:

1. The future challenge is to maintain the extensive information current.

Healthtalkonline has an international coverage, with partners in 10 different countries, including Germany, the Netherlands, Spain, France, Japan, Republic of Korea and Australia. Each partner uses the same methodology and interviews people in local language and is member of the of DIPEx International – a consortium of 12 countries that use the same methodology (see www.dipexinternational.org)

The service is fully integrated into the national health and social care systems and further developments are planned to increase its scalability, such as adding new modules on diseases not yet covered by the available interviews; Expanding to the Czech Republic, China and New Zealand through organisations (charities and/or universities) interested in using the same methodology of recruitment, data collection and analysis; using of tablets and smart phones.

 

 

References:

Newman MA., Ziebland S., Barker KL.(2009) Patients' views of a multimedia resource featuring experiences of rheumatoid arthritis: pilot evaluation of www.healthtalkonline.org, Health Informatics J. 2009 Jun;15(2):147-59.

Ziebland S., McPherson A.(2006), Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness), Medical Education , 40: 405–414

Resources:

www.healthtalkonline.org

www.youthheallthtalk.org.

www.dipexinternational.org

Contacts:

Charity details

The DIPEx Charity

Address: PO Box 428, Witney, Oxon OX28 9EU

Telephone: 0044 01865 201330

E-mail: info@dipex.org.uk

Graham Shaw (Chief Executive)

Telephone: 01865 201330

E-mail: graham.shaw@dipex.org.uk

Access to the interviews’ full texts, contact the research director: hergadmin@phc.ox.ac.uk