When Charity is Digital Health Technology’s Best Friend By Victoria Barry, DigitalHealth.London Published: 8 June 2017 Collaboration for Mutual Benefit As schemes such as DigitalHealth.London’s Accelerator our NHS Digital Pioneers Programme have been finding out, collaboration between the creators and developers of digital technology for health and the charities relevant to their projects are answering many of the concerns commonly raised as obstacles to co-development, (such as unfamiliarity with technology, the need for demonstrable cost-saving and uncertainty as to operating responsibilities), and demonstrating the mutual support benefits of shared enterprise. Funding for Stroke Patient Technology Alexander Leff, Professor of Cognitive Neurology at UCL’s Institute of Neurology is one of Digital Health London’s 2017 Digital Pioneers. His collaborative research at UCL has led to the development of two online therapies which can be used by stroke patients who suffer visual disorders. Alexander recruited patients from his NHS hemianopia clinic to help with the design and trial of Read-Right and Eye-Search, which provide moving text therapy, and are ultimately designed to be used without the help of a healthcare professional. He had discovered that while his initial trial was the third which proved the success of moving text therapy, the treatment was still not widely accessible. After creating Read-Right, a reader which was accessible to patients remotely, Alexander remained concerned that although the team had changed the way therapy was used, what was needed was a scientific programme which would diagnose the condition, measure any therapeutic effects of treatment, and feed the information back. Game Therapy This is where the Stroke Association came in, supplying Alexander’s team with a £162,000 grant to turn the therapy site into that programme, and the investment led to the development of a second therapy, Eye-Search which gamified the therapy to make the experience more fun for users. “The first challenge was getting funding to the sites set up.” says Alexander, “Without winning competitive research funding from the Stroke Association, these digital neuro-interventions would not exist.” Alexander managed to get an extra three-year extension to the Stroke Association funding using a 50:50 model with UCL, which enabled the websites to continue running, and provided technical support for users. He is now working on a sustainability business case for the project’s future. In the meantime, he has continued to benefit from charities’ support, using an Invention for Innovation NIHR i4i grant to help formalise patient involvement in his research, and running structured focus groups with Connect, a UK aphasia charity. He has also successfully applied for funding from the National Institute for Health Research and the Medical Research Council, to develop three new ambitious web-based therapies. Comic-Book Theory Another Digital Health London 2017 Digital Pioneer is Partha Kar, Consultant in Diabetes and Endocrinology at Portsmouth Hospitals NHSTrust. His project involves the development and co-design of a web resource for patients with Type-1 diabetes. T1 Resources is a comprehensive information portal for anyone with Type-1 diabetes, designed to be a central platform for resources borne out of the extensive use of social media by patients, and the lack of a single ‘one-stop’ online hub. Key to the project has been interaction with patients, in clinic events or at local and national events, resulting in the creation of a website which not only serves to raise awareness and understanding of the condition, but is also aimed at improving care and connecting patients using social media, in particular blogs and twitter. Interaction Highlights Need “Interaction with charity organisations such as Diabetes UK and the Juvenile Diabetes Research Organisation (JDRF) have highlighted the needs for developing tools, which are mostly about raising awareness but also about making information about the condition ‘less boring, more fun.” explains Partha, “Using social media as well as working with passionate committed individuals helped us get to the ‘right’ people, while funding assistance from charities, and unrestricted educational grants from pharmaceutical organisations helped move the projects into place.” Feedback on social media has been extremely positive, and the Comic Book – an online publication which portrays the young patient as a superhero and deals with the issues around diagnosis, the pathology of diabetes type-1, and living with the condition, has already been adopted by the JDRF, which is making it available to all newly diagnosed diabetes-1 patients. Further plans include animation, a second issue of the Comic Book, and the formalisation of the T1 resources site, as wells plans for financial sustainability. Getting Things Moving Digital Health London Digital Pioneer Pamela Scarborough is a physiotherapist, specialising in therapy for Cystic Fibrosis patients, and she is also the co-founder of Pacster, an initiative designed to deliver on-demand exercise videos, and community and motivational support to people with specific health needs. “Patients often struggle to access exercise classes” explains Pamela, “Attending a gym may be difficult due to poor physical or emotional health, fear of doing harm, body-image concerns or dependency on medical equipment, interruptions for appointments and so on. Availability of recommended exercise classes varies. As well as health benefits, we aim to improve peer-support and self management skills through online group exercise classes conducted via video-chat. We believe Pacster has the potential to help many people living with long-term conditions.” The team has already released its first channel for people with Cystic Fibrosis, which was achieved with the collaboration of the Cystic Fibrosis Trust. The value to Pacster of the CF Trust is two-fold. CF specialists have been involved in the resource’s development, and all videos have been endorsed by the Association of Chartered Physiotherapists in CF. In addition, the production of the content was funded by the CF Trust, allowing for the resulting resource to be made available to the CF Community free of charge. Feedback has been positive, and Pamela is currently working on building case-studies and research plans with NHS institutions to evaluate the potential cost savings of the initiative. Vital Input for Tech Development A fourth Digital Pioneer who has been able to collaborate with charity organisations in the development of a technology initiative, is Anna Coughtrey, Clinical Psychologist and Clinical Research Co-ordinator at Great Ormond Street Hospital NHSTrust. Anna has been working on the creation of an online platform which aims to transform access and delivery of mental health care to young people aged between 13 and 24 with cancer. “Research has demonstrated that online cognitive behavioural therapy is effective in reducing depression and produces results comparable to traditional face-to-face treatment across this age range, but we found there was no availability of online resource for distress and low mood in this patient group.” Anna explains, “We interviewed NHS staff working with young people with cancer, patients themselves and their parents and careers to scope the need for our platform and identify the key content, and we were able to work closely with charity organisations such as CLIC Sargent, MacMillan, and Teens Unite in the development of our website.” The collaboration with the relevant charities was crucial in ensuring that the website is fit for purpose, and sustainable, and Anna and her team plan to continue to work closely with CLIC Sargent in particular, to ensure that the website is adopted on a national scale, via linked charities. Overcoming Obstacles Together Often-cited obstacles to collaboration between technology companies and charities include a lack of confidence on the part of charities’ senior managers and trustees, who may believe that they lack sufficient understanding of the technology to ensure good investment decisions. Some may also fear that the running of technology projects which will deliver benefits may demand additional skills or resources which will have a cost impact. These concerns are not restricted to charities , businesses large or small can often feel the same. However, a recent survey by the Charity Technology Trust into organisations which had taken advantage of the Trust’s technology donation programme indicated that 80% of participants had seen a positive impact on their ability to deliver services to their beneficiaries. Win-Win As is being seen across these and many other collaborative projects, the benefits of charity involvement in technological innovation, from the outset of a project through to its eventual roll-out, can be many. From access to data and the real-life experience of a charity’s membership, through access to the skill, wisdom and knowledge of a charity’s history, to its endorsement, national membership roll-out and awareness raising, and even to direct funding, the digital pioneer, or technology company, can clearly benefit. In return, charities may secure access to the latest developments, may be able to pilot, borrow, or even receive longer-term access to new technology for its members, at a fraction of the commercial cost, and with the added benefits of further cost savings to community and hospital healthcare systems. Original blog was published on the DigitalHealth.London website.