Confidentiality, anonymity and ownership in research

I’ve been to two very good workshops recently at the University of Leeds, both on research ethics. These workshops are always informative, and they end with a session where you discuss a few thorny case studies with people sat at your table.

At the most recent one, my group got immersed in a debate about whether and how a researcher should disclose knowledge gained about someone who knows they are HIV positive and who is having unprotected sex with someone they name who is not aware of their HIV status. Very difficult. Its best to think about these things in advance, before the research gets started! (See for instance this KSPope website, scrolling down to the heading ‘Is there a legal duty to protect or warn third parties’)

Dr Alice Temple at the University of Leeds research ethics workshop.

Dr Alice Temple at the University of Leeds research ethics workshop.

Here are some of the main points that were made by the University of Leeds Research Ethics Training and Development Officer Alice Temple at the July workshop on ‘Ownership, Confidentiality and Secrecy‘:

Anonymity: means ensuring the people who take part in research cannot be identified.

Confidentiality: relates to who has right of access to data provided by participants, and is guided by data protection legislation.

Confidentiality is enshrined in many codes, such as the Hippocratic Oath and ESRC Framework for Research Ethics (we have used this framework extensively at Bradford College in developing our policy and procedures).

Be clear about the boundaries: At the outset, you should explain to potential research participants when and why you might disclose, and that you will discuss this with them. In exceptional circumstances you may need to breach without prior discussion.

You need to be clear about this in advance (the HIV example I gave at the outset is an instance where this was not thought through) and know what your procedures will be if a breach seems necessary.

Where boundaries are set out: in the consent form. And possibly in the research contract. Informal promises must be honoured. Sometimes there is an implied requirement to be confidential – newspapers are often in a very grey area here, arguing that information a celebrity sees as private should be in the public domain. In court, you need a very strong case to claim that publication is in the public interest.

When you breach confidentiality: this is necessary where there is significant risk of harm. In rare cases there may also be a ‘public interest’ justification.

Sometimes researchers become aware of inadequate performance or malpractice at public or other organisations – the decision then is whether to go public or not. A middle road may be advising the organisation of the findings and giving them six months in which to go public. If they do not publish the information in that time, the research body releases the findings.

Get guidance and support on confidentiality disclosures: it may be necessary to have legal advice if you think you have to breach confidentiality. Sometimes it may be that sensitivie information disclosed to you in research is already in the public domain – check this is the case before you disclose the information yourself, as there are different understandings of where ‘public domain’ begins and ends.

‘Off the record’ information: if something is given to you off the record you cannot include it in the research.

Checking for approval: You may send transcripts and research text back to interviewees for checking – there is no obligation on this, but it can be good practice.

The requirements of sponsors: this is an area where tensions can arise. A sponsor may reserve the right to edit, annotate or withhold publication. The role of Univresity is to put things in the public domain. There is also a distinction between ‘research’ and ‘consultancy’ that can become blurred, and may compromise the independent, objective and public requirements of research. It is necessary to consider secrecy clauses carefully, and get all involved (including the researchers) to declare any conflicts of interest.

Ownership: any research conducted as part of an employee’s work for a university, or by staff or students using university facilities and resources, belongs to the university. With regard to inventions and commercialisation of research products, there may be agreements whereby a percentage of the profit goes to the individual(s) involved.

Where a sponsor commissions or pays a university to carry out research, the issue of ownership may require definition in the initial contract. It is here that secrecy clauses may be proposed, and these must be handled with caution.

The Data Protection Act:
This underpins most research practice relating to confidentiality. In summary, the Act has the following implications for research:

  1. Personal data will be processed fairly and lawfully: for research this means a really good consent form is usually key, with researcher name and contact details, purpose, and who has access to raw data.
  2. Personal data can only be used for one or more specified and lawful purposes. Research data is apparently exempt from this, but where possible participants should be informed if their data is going to be used in a different research project.
  3. The personal data gathered should be adequate, relevant and not excessive to the purpose of the research
  4. The data must be accurate and kept up to date. Keeping data up to date can be challenging: one option is to ask all participants to contact you if details change.
  5. Data should not be kept longer than necessary (5-7 years is seen as reasonable).
  6. Data should be processed in accordance with the rights of data subjects.
  7. Researchers must implement measures to protect data from loss, damage, destruction, hacking etc. Encryption is important. Many mobile devices are not secure, but it is hard to avoid using them, at least short term. Data should be encrypted and stored securely.
  8. The final point relates to sharing data outside the European Economic Area

Text and photos by Ruth Wilson.

Contact Ruth for a copy of the College’s model consent form and other research ethics guidance: r.wilson2 at Bradford College.

Supporting students who are deaf or hard of hearing

Bradford College has an unusually high number of deaf students.

There are two main reasons for this: firstly, there is a higher incidence of disability in general and deafness in particular in Bradford. Secondly the College has a very positive reputation as a place for deaf people to study and this attracts deaf students from across West Yorkshire and beyond. Most are aged 16 – 24, but there are students of all ages, with a number in their 60s and 70s. They include anyone whose hearing loss impacts on their studies.

I spoke to Learning Support Tutor Nicola Storey and Team Leader Chris Thornton to find out about their work and the ethics issues it raises.

Christopher Thornton and Nicola Storey, Bradford College Deaf and Hard of Hearing Team

Christopher Thornton and Nicola Storey, Bradford College Deaf and Hard of Hearing Team

Meeting Nicola and Chris
Nicola is a qualified teacher of the deaf – it is apparently very rare, and outstandingly good for a College to have a qualified teacher of the deaf. Nicola is just that, and in addition she has an MA in Deaf Education. Chris is a qualified note-taker, has trained in the use of technological aids, and has advanced qualifications in British Sign Language (BSL). Between them they have years of experience.

Nicola did not intentionally set out to work with the deaf – her interest and commitment has developed through years of working with deaf and hard of hearing students. “I was a student here, studying health and social care. I moved straight from that into being a support worker, helping students with special needs,” she says. Later, Nicola went to university in Hull to study social policy. She continued to work for the College in the holidays, and on graduating returned as a full time senior support worker. She had a spell lecturing in IT and basic skills, and then went on to do the MA.

For Chris, it began with having friends who were deaf. “For most people who learn sign language and work in this area, it starts because someone in your family is deaf. But not me. I grew up in Doncaster and for some reason my path seemed to cross with lots of deaf people. I remember playing football with deaf kids my age and experiencing the frustration of being unable to communicate. In my final years at school I went to Saturday classes and passed Level 1 and 2 BSL and did some work experience in a local college.” Chris started working aged 16, spending ten years in different areas of deaf education in Wakefield. He has worked at the College since 2010.

Some of the Deaf and Hard of Hearing Team (back row) with students (front row). Nicola and Chris are in the centre of the back row.

Some of the Deaf and Hard of Hearing Team (back row) with students (front row). Nicola and Chris are in the centre of the back row.

The Deaf and Hard of Hearing Team
There is a team of 16 Communication Support Workers, supporting our deaf students.  They all have advanced sign language qualifications, and they are part of a wider team of some 70 staff providing learning support to students with disabilities. “The role is very diverse,” Nicola says. “You can be supporting someone understand when to use capital letters, and then be giving advanced support to someone doing research for a Masters. A support worker has to work across all subject areas, from basic skills to postgraduate level.”

British Sign Language is a relatively new language,” Chris explains. “Because there’s no literal word for word translation from English to BSL, and with the range of courses we do here, often we find ourselves working with the deaf student to  devise new signs as the need arises. This is the beauty of our team – we are so lucky to have people at that level.”

In addition, some of our students have weak  English language skills – signing is their first language, and English may be an emerging third or fourth language. .

The service covers all education support needs relevant to the student’s course, and support sessions such as counselling if someone needs this. If a student wants to get involved in other areas of College life, those departments then set up the relevant support.

The ethics issues
“Confidentiality is essential,” Nicola says. “Complete translation is also key. You have to interpret everything, communicate an entire message – emotion, force, intention, message. That’s important to equal access, opportunity and treatment, and being heard and understood.”

The Deaf and Hard of Hearing Team only uses its trained and qualified support workers as for interpretation and support, and does not involve family, friends or volunteers as translators.

There are two ways in which deafness is defined. One is a medical one, where deafness is a physical impairment or loss of hearing. The other is cultural, where people identify themselves as members of a deaf community, and view this as positive.

“Its big D and little d,” says Chris, “with the Deaf community claiming a capital D. We have both kinds of students – those who do not particularly identify themselves as Deaf tend to be people who’s loss of hearing has started later in life.”

The team does not make judgements on this, and they work across a continuum of hearing loss. Students are required to have medical evidence confirming their disability if they want support, but otherwise it is for the individual to decide how they define and perceive their deafness.

“There is an on-going debate,” Chris says, “as to whether deaf students are better off in a dedicated school for the deaf, or whether they should be integrated into mainstream education. That discussion is probably not going to be resolved, and there are benefits on both sides. I guess we are all working here because we believe students should be able to attend a College and have the chance to do well.”

The hard work has results….
The proof is in the pudding: apparently our deaf students often do well, through their own hard work and with the highly professional College support. One recent student came straight from school on a Level 1 IT course and now has a degree in business administration. Another, Neelam Hussain, is winning lots of awards and competitions as a hairdressing student, including a Rising Star award in the recent Oscar-style FE awards ceremony held annually by the college.

Its great to meet Nicola and Chris and find out all this. Repeatedly in this blog, interviewees are demonstrated the active and considered ways in which the College works to provide opportunity and a positive experience for anyone wanting to study. The Deaf and Hard of Hearing Team is integral to this.

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Saying ‘cheese’: members of the Deaf and Hard of Hearing Team line up for a group photo.

photoLinks:

The Association of Community Support Workers

Bradford College runs classes in British Sign Language – see the community learning prospectus for more information. Neelam Hussain, the student mentioned above, is featured on the front cover of that newspaper style prospectus!

Involving human participants in research – the key ethical concerns

Last week I went to the University of Leeds to attend a morning workshop run by Dr Janet Holt on ‘Involving the Public in Research’, organised by the University’s Research Support Team.

I went to this training to learn more as we continue to develop our research ethics procedures at Bradford College. We don’t do medical experiments or large-scale scientific or environmental tests. Our most common research ethics issues are around the involvement of human beings in research, as researcher or participant. So this was the workshop for me.

Dr Janet Holt

Dr Janet Holt of the University of Leeds.

Dr Holt was an excellent – and impressively qualified – guide. She is a Senior Lecturer in the School of Healthcare at the University of Leeds, and a registered nurse and midwife with a BA (Hons) in Philosophy from the University of Leeds, an MPhil in Applied Philosophy from the University of Manchester and a PhD in Psychology from the University of Leeds. At the University, she is Chair of the Faculty of Medicine and Health Research Ethics Committee. She is an expert member and Vice Chair of Leeds Central NHS Research Ethics Committee. She is also an external member of the Research Ethics Committee in the Faculty of Business and Law at Leeds Metropolitan University and one of ten people appointed to the Ethics Committee of the Royal College of Nursing.

These are some of the main points from the workshop:

Trust: there is a reliance on researchers being honest and the best thing is to be morally responsible from the outset. I was interested in this, because no research ethics committee can fully know whether its ethical guidance or requirements are applied, though many universities run spot checks and there can be hefty penalties for those who get it wrong. A good ethical culture and training has to underpin the research ethics policy.

Informed consent: this is key. Dr Holt dwelt on the importance of the concept of autonomy in the UK. People expect and have the right to make informed choices about whether they participate in many things, including research. They need to do this freely, without concern for power relations or possible consequences. The information sheet given to potential research participants is an essential component and needs to considered early in the development of the research project. There was a short but stimulating discussion about the possibilities of using video, audio and other online tools to inform potential participants in appropriate ways, of great interest to me with my communications hat on, and as I complete a course in E-learning and Digital Cultures. The bottom line is that securing evidence of valid informed consent is a prerequisite to doing research, and this is not always easy. Persuading people to take part in your research is a fine art, and sometimes very sensitive.

Protection from harm: harm may be physical or psychological, or perhaps take other forms such as time and cost. The researcher may be at risk as well as the participant. Sometimes research requires that the participant be kept in the dark in some way, or even deceived. This can be acceptable, but needs to follow strict ethical guidelines and needs scrutiny and clearance by the research ethics committee.

Confidentiality: this is distinct from anonymity. Anonymity refers to concealing the identities of participants in all outputs resulting from the research; confidentiality is concerned with who has the right of access to the data provided by the participants. The data protection act provides a legal framework for this. Researchers have a duty to ensure confidentiality, which can only be breached with prior consent (and must be breached in particular circumstances such as potential harm or disclosure of criminal activity).

Dr Janet Holt teaching research ethics

Dr Janet Holt teaching research ethics, University of Leeds.

It’s really important at the College that we have a system that is robust but at the same time not overly bureaucratic or disproportionate to the scale of risk, and Janet was very alert to this. We could have spent a week or longer on the topic overall. It is always helpful to meet up with others who have to address research ethics principles. Real life issues do not always fit neatly with the guidelines! So a very useful morning.

By: Ruth Wilson, Development Consultant, Bradford College (see ‘About’)