All I want from research

Well, not necessarily ALL I want from research but at least for starters....

I always imagined that if a research study was developed and adopted by the NHS that I would be informed. I would be particularly interested in a study that looked at longer-term effects of radiotherapy on patients with cancer of the head and neck. I discovered that I was wrong.

As a Patient in the NHS

I am and always have been a patient in the National Health Service. (My brother was born just before its inception and we still have the original receipts for the cost of birth.) I, along with others, was born afterwards and was given a unique number. 

As a baby my parents were invited to bring me along for various injections. I have given my personal details on many occasions, changed and corrected them as appropriate. I have a card with my number and there is a file in my doctor's surgery.

In my later years my birthdays heralded requests to come in for check ups and then more recently to provide a sample for the bowel screening programme.

Whose information is it?

I have, I believe, fulfilled most of my role in providing information yet the NHS has a confused view of what it can and can't inform me about. It seems able to contact me when it needs something but less able when I might want something.

The reality is that the strange rules of data protection are used to prevent information being passed to me about relevant research studies, clinical trials and other research opportunities. Yet most people I speak with naturally assume that they will be informed about research.

I have the same responses when I hear that tissue samples, biopsy material and removed tumours are routinely destroyed unless prior consent was provided. It is both wrong and a waste.

A Constitution Right?

The NHS Constitution states that people should be informed of research that is appropriate. Yet how do we achieve this ambition?

I would like to see the NHS have a system that allows me to register my interests in research, my desire to have tissue used and to maintain regular engagement and contact as to how I might get further involved.

Need for a Register

I want to be able to record my particular interests for research. These could likely be assumed to be for cancer especially for head and neck patients. However, the reality is that I would be keen to know about research for arthritis, osteoporosis, psoriasis, mental health, social care amongst others.

I would be keen to indicate a willingness to participate in different types of research - clinical and social care for both qualitative and quantitative studies. I would be content to provide broad data about my age range, general health and highlight an interest in research that might take place in my region and to state how far I would be willing to travel.

I would happily consent to an NHS approved employee looking at my patient records. 

Liberties or Opportunities

Some people will say that this could be an infringement of my civil liberties for someone to look at my records yet anyone who purchases anything from the Internet will suddenly see further recommendations for similar goods appear in pop-up windows or as inserts in other regularly visited sites.

Certain large supermarkets already give us special offers on our favourite items. Insurance Companies who ask our mother's maiden name are more than likely building our family trees as I write. 

I am not suggesting that we adopt the same dreadful commercial practices yet the elements of customer choice, meeting customer need and being responsive to demand must be given higher priorities. This is especially true if we want to have best evidenced based treatments and care delivered in our homes and clinics.

Information Needs and Wants

So, if I am willing to express my interests and needs I should expect to receive information about research in general, about studies that are particularly relevant. I should similarly expect to receive the results of any trial in which I participate. All information must be in language that is generally understandable by members of the public.

Such a register of interest is potentially of value to patients as well as researchers and ultimately the NHS. It may only provide a long list of possible research participants yet it offers the potential to increase the numbers who might be eligible to take part.

Making the register part of the NHS means that we have certain controls over protection, patient safety and could tie it into regular GP appointments. Promotion of the register through social media may additionally reach people who would not normally become research participants. Equally there is the potential to promote research through a register in specific communities where there is little or no participation.

I would also be keen to state on any register my willingness to become actively involved in research design, delivery and dissemination.

I should also expect that voluntary sector to be playing a far greater role in talking about the value of research in general, gathering patients views for research and lobbying the NHS to apply research in practice.

Involve the Public 

The targeted involvement of patients, carers and the public can be beneficial in providing insight that can inform research leading to improvements in the quality of questions, better recruitment and hopefully the application in improved treatment and care.