SAFE: a pan-European approach to supporting stroke patients

Stroke Support Organisations (SSOs) come in a variety of flavours. Some are run solely by stroke survivors, some by healthcare professionals and others by a mixture of people with a professional or personal interest in stroke. At a minimum, most SSOs offer information and advice to stroke survivors, but they might also provide peer support, family counselling, rehabilitation therapy or welfare services. Many also engage in wider ranging activities such as awareness campaigning, prevention screening, lobbying for better services, and funding or facilitating stroke research. But despite all this heterogeneity, SSO are united by one common goal: to reduce the negative impact of stroke on individuals, their families and the wider society.

It is this shared agenda that brings together 26 unique SSOs from across Europe in the Stroke Alliance for Europe (SAFE). Each member organisation works within their own country to support people affected by stroke, but also comes together within SAFE to give stroke survivors a voice in the wider context of Europe. Working together at a pan-European level gives SSOs more leverage to lobby the EU government, to share best practice and to achieve a greater awareness for the cause.

The involvement of patients in health policy and medical research is becoming an increasing priority for the European Commission, and quite rightly so. No-one is better placed to define the requirements of a healthcare system than the end users. This is an expanding area of work for patient organisations and one in which a pan-European group like SAFE may add more value than individual SSOs alone.

SAFE is already a partner in several EC-funded stroke research projects and has contributed in a myriad of ways. Within the European Stroke Network, SAFE works as a translator and disseminator, making their complex preclinical research accessible to lay audiences. SAFE has produced a lay brochure showcasing their cutting-edge research and is in the process of translating it into eight European languages to reach a wider public audience. 

Patient representation in clinical research can bring benefits to all stakeholders. If consulted throughout the research design process, the involvement of patient groups can make sure trial protocols are feasible and acceptable to patients. The patient perspective can often highlight potential barriers to success that may have been overlooked by scientific investigators.  SAFE is currently involved in two large European clinical trials for acute stroke, sitting on the trial steering committee for the EuroHYP-1 trial and the Ethics Advisory Board for the WAKE-UP trial.

For EuroHYP-1, SAFE has played a key role in the development of accessible patient materials to support the trial. These include:
  • the information booklet that is given to patients and family members at the time of trial recruitment
  • a questionnaire to gather patient views on their treatment experiences
  • a recovery diary to support and monitor patients in the three months after discharge from hospital
The provision of lay-friendly and supportive information will not only improve the patient experience but will also enhance patient recruitment, compliance and retention to follow-up, thereby improving the overall quality of the trial. 

SAFEs involvement in European stroke research allows its members to stay up-to-date on the latest breakthroughs and promising treatments. In turn they can pass on this potential live-saving knowledge to patients and healthcare professionals within their own countries.  By taking an active role in the World Stroke Organisation, SAFE hopes to raise the profile of SSOs across the globe and to demonstrate the value they can bring to the international stroke community.

Over the last five years, SAFE has supported the creation and development of many new SSOs, especially in Eastern parts of Europe where patient support organisations are not as prevalent. As the SAFE network grows, so too does its capacity to support research, to draw on best practice from a wide range of sources and to broadly disseminate research finding across country borders.

Dr Clare A Walton on behalf of the Stroke Alliance for Europe

SAFE: a pan-European approach to supporting stroke patients Reviewed by Carmen Lahiff-Jenkins on Friday, July 05, 2013 Rating: 5

1 comment:

  1. What a lucid, exciting summary of the research topics and the role of stroke support organisations as partners in them,


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