Hearts of Salford

Acronym of the case:

HoS

Web address of the case:

http://www.heartsofsalford.net

Country of the case:

United Kingdom

City/region:

Salford

Posting Date:

7 July 2008

Last Edited Date:

22 July 2008

Author:

Simon Smith (Centre for Digital Citizenship, Institute of Communications Studies, University of Leeds)

nhs | heart | forum

Type of initiative

Promotion/awareness campaign

Case Abstract

Hearts of Salford is a safe, informative and relaxed online meeting place for people, and the families of people who are living with heart disease and related health conditons. It also serves as a gateway to information about heart disease, healthy living, and local services. As the name suggests, most members are from Salford, and most are older people.
It began as a research study at the University of Salford, which recruited around 50 volunteers for the online component of the 18 month-long study (mid-2006 to end-2007), plus 50 people in the 'control group'. The aim was to test whether, and if so how, facilitated learning via an online, interactive portal, could empower patients to better manage their health condition (increased self-confidence, greater skill in using the Internet for health information, changes in health-related behaviour, greater social support, better psychological health, and more effective health service use). Facilitated learning had two components: the support of the research team and the mutual support of peers.
The study had a second aim of building participants' capacity to take over control of the website once the study had ended. Members valued the resource (above all the opportunity to interact with each other using threaded discussion forums) so much that this was a smooth transition. Today, Hearts of Salford is a self-managed community group, supported by the British Heart Foundation, the National Lottery and the Salford Neighbourhood Chest. The resource is now available to other people who did not take part in the research study, and is promoted in partnership with the Salford Primary Care Trust, the longstanding Salford Heart Care Support Group (its 'offline' equivalent) and Salford City Council's Community Telematics service (who are available to provide IT training to any members who need it).

Description of the case

Domain

eHealth

Topic

Health portals | ICT and lifestyle management | ICT for disease prevention and health promotion

Sector

Healthcare | Local/Regional Community Development

Start date - End date

July 2006 (Ongoing)

Date operational

April 2008

Target Users

Target Users Description

The original target group was people aged between 50 and 74 with a diagnosed heart condition, resident in Salford, Greater Manchester, UK. We estimated there are about 6,000 such people. These restrictions were partly due to the need to recruit a relatively homogeneous sample for a randomised controlled trial. Following the end of the research phase in December 2007 it was decided to broaden the target group to include anyone with heart disease in Salford and surrounding districts of Greater Manchester.

Scope

Local (city or municipality)

Status

Implementation

Language(s)

English

Policy Context and Legal Framework

The project was a research study run by the University of Salford, so was governed in the first place by the ethical frameworks for research of the University and the local Primary Care Trust.

The broader context for such a project is the growth of a health consumer movement on the one hand, and recent reforms to the National Health Service on the other, both of which have emphasised patient empowerment, choice, and individual responsibility. Another theme of NHS reforms has been a concern with social and geographical health inequalities, which this project addresses because it takes place in one of the most deprived areas in England, with particular poor indicators for health. Hearts of Salford is thus also an eInclusion initiative, which adopted a similar approach to the English Wired Up Communities and the Scottish Digital Communities, although it targeted a patient group spread across a city rather than a single neighbourhood.

Health has become one of the most popular of Internet activities, both information-seeking and community-building, but concerns have been raised over the quality of health information available online, or about patients' capacity to discern between reliable and unreliable sources. Recently the UK government has invested large sums of money in re-vamping the main NHS website(www.nhs.uk) which now aims to provide a single, and personalisable, point of entry to 'authenticated' health information and advice. Hearts of Salford sought to do likewise (with an emphasis on locally-relevant information) but it also recognises the importance of buidling an online community 'from the ground up', using a participative approach, and so enabling peer-to-peer support and exchange of experience-based knowledge among people who, in addition to struggling to live with a serious, long-term health condition, often had little or no previous online experience.

Project Size and Implementation

Type of initiative

Participation

Overall Implementation approach

Non-profit sector

Technology choice

Open source software

Funding source

Public funding national | Charity, voluntary contributions

Project size

Implementation: €300-499,000

Yearly cost:

€49-299,000

Implementation and Management Approach

The research study was managed by a team consisting of the principal investigator (one day a week), two researchers (one full- and one part-time), a part-time project secretary and a part-time, later full-time project technician.
The project is now managed by a voluntary committee of about six project participants, i.e. it is self-managing. Formally, there is a chair, a treasurer and a secretary. Practically, the following responsibilities are shared among committee members: moderating the discussion forums; handling queries and registering new participants; website management; promotion and marketing (mostly offline, via liaison with local health service providers, adult learning providers, voluntary sector organisations and the media); providing technical support on a mutual and voluntary basis; befriending new members; identifying training needs and provision; fundraising. The management approach could be described as experimental, since as far as we are aware, no initiative of this type operates in the area for any other health condition.

Technology solution

The project utilises a Moodle-based portal. This was chosen for ease of use, sustainability (free open source software) and interoperability (ability to take the content to another platform, should the need arise).

Impact, innovation and results

Impact

The results of the research study supported the following hypotheses that the trial was designed to test. Facilitated learning brings:
- Increased self-confidence
- Greater proficiency in use of the Internet for health information and other purposes
- Changes in health-related behaviour with respect to diet
- More social support
They did not support (nor do they reverse) our predictions for how facilitated learning might improve smoking, alcohol-use and exercise or psychological health. Self-referral by participants to their doctor increased with Internet use, by a process that suggests that being better informed was the driver.

Facilitated learning is necessary to overcome the digital divide, particularly for people who are vulnerable, for example due to chronic ill health, reduced mobility and/or low income. It is also resource-intensive. We cannot argue that providing Internet access with facilitated learning to patients with coronary heart disease (CHD) is â€˜cost-effectiveâ€™, because, as yet, we lack evidence of long-term effects on health, independent living and employability. CHD certainly carries a high cost to the economy. For 1999, the cost of CHD in the UK was estimated at Â£3,530 per case - roughly Â£4,340 per annum at 2007 prices. Against this, the cost of the present project per participant was Â£3,750 per year and it is set to continue and maybe expand without that cost recurring. The results suggest that GPs face more not less demand from participants in such a project, but better-informed demand. We need to find out whether in the long term that reduces surgery.

The other significant impact of the project is through capacity-building. Control of the online community was passed to participants at the end of 2007. They formed a committee, registered as a community group, raised funds for their running costs, and have begun to promote Hearts of Salford as a resource for all people with a heart condition in cooperation with relevant partner organisations in Salford and Greater Manchester. Furthermore, the Internet skills participants gained in the project have been applied in other fields of eDemocracy and eParticipation: many participants, for example, have used the Internet to get invovled in discussions around local and environmental issues, or to make use of online government and commercial services.

Track record of sharing

We have shared our experience as widely as possible with other local partners (public and community sectors) involved in cardiac health, health promotion, health inequalities, community development, lifelong learning and digital inclusion, all of which are potentially impacted on by this project. It has achieved a high degree of local visibility and support, so that, for example, the website is promoted to users of the cardiac rehabilitation service, as well as to users of Salford community telematics courses and drop-in centres. Cooperation with a longstanding local self-help group for people with heart disease has grown in intensity recently so that people can be referred between 'online' and 'offline' initiatives.

We have also shared research findings with the academic community through conference and workshop presentations and journal articles.

Lessons learnt

Lesson 1 - Don't understimate the time and effort needed for recruitment, marketing and promotion of eInclusion and eHealth initiatives. Involving community-based intermediaries can be invaluable, and, if feasible, it is advantageous to allow time for your message to spread by personal recommendation through word-of-mouth. Starting on a neighbourhood scale is advantageous if this is possible.

Lesson 2 - Make sure you have sufficient resources for technical and administrative support. We found ourselves frequently over-stretched with just one technician to provide support for around 100 participants. A sustainable exit strategy also needs to be in place so that some form of non-commercial technical support continues to be available for this target group. A lot of extra work was also generated by billing and other administrative errors by Internet Service Providers: you should anticipate such difficulties (at least in the UK) if you are planning any project which will involve liasing between users and ISPs!

Lesson 3 - Building online communities with older people who lack Internet experience involves specific challenges but can also be very rewarding: after a slow start some participants invested huge amounts of time, effort and passion in the online discussions. Moderation that was friendly, timely, and stimulating but not dominating, was an important factor in the first phase of the project.