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The pivotal tool to empower patients is the symptom checker. This enables the patient to formulate a differential diagnosis together with the doctor rather than just depend on what they are told. It allows the patient to form their own judgement about their diagnosis and so ask their doctor better questions and be more confident in challenging them. A quick and correct diagnosis is the first and most important step getting treated appropriately and cost effectively. We recently released a patient version of our professional system and this is a highly sophisticated symptom checker which patients can access at no cost at symptomchecker.isabelhealthcare.com/home/default

One of the greatest differences that digital technology has made to many of our lives is the ability to access information. The internet specifically allows anyone with a PC or smartphone to access information that previously would have been near impossible to obtain without connections to a relevant expert. Information on almost any health issue or medical condition can be accessed immediately, discreetly, and to a level of detail that fits the needs of enquirer. Detailed information, including research papers and trial reports, for a range of interventions can be accessed online by people who want to know more about the treatment and support services they are, or in some case are not, being offered (although there is still some way to go on getting pharmaceutical companies to open up their research). Looking at organisations funded by the Nominet Trust there are examples of online patient information being provided in terms of detailed lists of specialist support services (e.g. Online ME Centre) and examples of comprehensive libraries of information relating to specific conditions. Digital Technology can overcome a variety of barriers to accessing specialist support, such as transport, location, mobility, language, etc. One of the Trust’s most recently funded partners, Dyslexia Action, is in the process of creating an innovative distance learning platform, using new technologies to provide specialist literacy support. This platform will significantly increase accessibility and will help improve the educational and social outcomes for thousands of young people who would otherwise struggle to access support services only offered through physical centres.

Possibly the most significant contribution of the internet is its unparalleled capacity to connect people. The internet allows people who may live miles apart, even in difference countries, to connect around shared interests, including very specific health issues. Even those patients affected by very rare conditions can make contacts and find communities online that are both supportive and informed. Digital communication technology can also be used to develop personalised support networks which connect family, friends and professionals providing formal and informal care e.g. Tyze.

Digital technology can also play a powerful role in giving patients a voice and enabling them to articulate their views, needs and experiences. An example of a Nominet Trust funded project in this field would be Podnosh’s Impact Assessment App. This app will allow community workers on the ground to record free text of how patients and service users say they are being helped and connect that to simple video and audio stories that document the difference they make and the gaps in services that are being identified. This content will then be analysed for trends and intended and unintended consequences, with the resulting combined and cohesive data presented to policy makers in a clear and usable way. More broadly, e-petitions and campaigns on social media platforms such as Twitter and Facebook can allow groups of patients and service user to self-organise and directly articulate their views to decisions makers and service providers. Digital technology can be used to enable the service users to identify, and communicate directly, with those responsible for providing care services.

The Nominet Trust has recently published a provocation papers by Shirley Ayres titled ‘Can Online Innovations Enhance Social Care’ and I would highly recommend it to anyone interested in this area of work. One of the key insights of this paper is that often patients and service users, for example the elderly, actually have an immense amount to give in terms of their energy, experience and wisdom. Digital technology can play a very powerful role in this respect through connecting like-minded individuals, overcoming the barriers that can lead to isolation and providing a variety of digital platforms to capture and share people’s stories.

Links:
http://www.actionforme.org.uk/get-help/services-directory/index
http://dyslexiaaction.org.uk
http://www.nominettrust.org.uk/what-we-support/projects/recording-real-l...
http://www.nominettrust.org.uk/knowledge-centre/articles/can-online-inno...

I do not want to talk down the importance of the internet in enabling patients. However, I think Complaints provide the ultimate form of patient empowerment. Because of asymmetric information, in the economists sense, and because patient interests may be confronted with powerful very firmly entrenched interests and views of health care professionals (see you excellent infomatics on patient choice differing from professional advice when fully informed), non complaint activity faces huge obstacles to be effective. Such efforts are constantly hampered by the constraints facing them. However, Complaints are UNDER USED and there is spare capacity already. Of course, complaint arrangements can clearly be improved but what really needs to happen as part of the "culture change" that we hear about so often, is that Patients need to be made to feel that they can complain with high prospects that it will be listened to and acted upon. Thus, they should be asked frequently if everything is OK and strongly encouraged to be critical. They should also be told that, if they wish, they will be given real opportunities to be kept informed about changes made in response to complaints.

At the end of the day, a patient's experience with the NHS is individual not collective, and that is exactly what is true for complaints.

The point of open access to data is not the access itself, it's what people choose/are able to do with it. And that varies tremendously by age, health status, socio-economic group and geographically.

The very latest innovations (I'm thinking of highly interactive and multi-dimensional apps like Storica, developed by Dana Pavel and Dirk Trossen at the Cambridge Computer Lab) enable both the medium and the message to be personalized and owned by the user in ways we would never have believed possible even five years ago.

One of the landmark changes of the past three years has been the ability of people not just to encounter and absorb more health data, but to co-create their own health data in ways that enable users themselves to achieve a richer appreciation of their own life, to add quantum to their own story. I call these new kinds of stories "quarratives", quantified narratives). Elliot Cohen's work at MIT and the whole Quantified Self movement, controversial as it is, is absolutely key to this.

Investment not just in opening access to data, but in developing and testing accessible platforms for people to co-create and quantify their own stories in ways that bring that data to life for them, is the next big summit to conquer for health economies of all kinds as we seek greater patient and community empowerment, self-management and wealth creation through informed data sharing.

Nick your reliance on the complains system is child like beyond belief

The patient is the primary reason for the context. Therefore they should be as near as home as possible and fully involved and informed. Technology and the process should serve the patient not the clinicians or supplier of service. http://endukayted.blogspot.co.uk/2010/02/nine-affirmations-to-help-shrin...
Point 9. From the above. The patient is the primary member of the team.
Unique journeys should be enabled through responsive engagement with a holistic consideration given to physical,social and mental health. The 100% of a person's context should not be devalued in order to serve the purpose of another data set. Responsive personalised prevention and intervention towards risk, encouraging openness and transparency on the journey. Replace reactive depersonalised statistical modelling.

You ask the question 'what are the benefits of involving patients in their own care'. From a pharmacist perspective, the more we can involve patients in the decisions about their medicines, including those that may lead to them stopping a medicine, the better. If patients understand why and how to take their medicines this will lead to better adherence, reduced medicines waste, reduced hospital admissions and most importantly of all - better outcomes for the patients. We need to really tslk with patients to understand what they want from their medicines. Pharmacists obviously have a key role in medicines optimisation but so do all other healthcare professionals. We will be publishing some guidance on medicines optimisation in the next few weeks and will be found at www.rpharms.com/medicines-safety/medicines-optimisation.asp . This will also include a resource for patients.

With my experience, involving front line nurses in the NHS care plan and decision making, will make a huge diference in the NEW NHS. Community nurses are in best place to take on this role. They see patient in their own home and have a very good idea of ther health and social care needs. Patients also trust and believe in their nurses as they come down to their level to explain things.
Also in a multicultural environment involving Ethnic minority nurses in decision making also go a long way in the care of patient.