Opportunity to help shape a research project

[ehealthgroup]

Hi all

I am a researcher at the University of Warwick. We want to do some research into how new technologies such as the internet and mobile telephones might be harnessed to help people with mental health problems (particularly young people under 25 years old). For example this could include websites that provide information and support, or services that provide online therapy, or emails or text messages between the health service and the patient. I am sure there are lots of other examples too.

At the same time I know people have some concerns about the use of technology. For example concerns about privacy or security of personal data, or about websites that provide misleading or harmful information, or disruptive behaviour in online communities, etc.

Anyway, at this stage I would really like to hear your views on this issue to help shape a research proposal I am developing.

• What do you think are the important questions that need answering?
• What do you think are the technologies that might be the most useful, that we should be studying?
• What possible problems might be caused by technologies?
• Do you have examples of where technology has been helpful or harmful?
• Who else should we be talking to?

I hope to get the views of people with mental health problems as I believe that publicly funded research has a duty to be relevant to the issues that matter to the public.

This post has been approved by the moderator (Mischief).

Please feel free to private message me or to post in this thread.

With very many thanks for any comments.

John

 

[leone101]

From personal experience I have strong reservations. I would be worried whether using any technology is beneficial if there is a risk it will reinforce the illness. For example a reliance on online communication leading to decreased social competence when meeting people in person, leading to poor functioning, low self-esteem and depression.

Information overload can be a of cause stress - e.g. too many emails syndrome.

Also getting emotionally involved in the electronic medium could lead to living in a fantasy to the extent that real life suffers.

There is the question: should we be encouraging people to rely on technology for their emotional and psychological well-being when it may increase their social isolation?

On the other hand, if people are hooked into high-tech. life anyway then this is a way into their reality and can potentially help them in the real world.

For example, text messaging is a way of gathering real-time information that would be accessible to most young people. One scenario would be a person living with bipolar disorder receiving "rate your mood 1-9 (1 lowest 5 neutral 9 highest)" they click 'reply' type a digit and press 'send'. This is then monitored twice a day by their psychologist.

This sort of interaction would not suit everyone, and could feel invasive so it would have to be carefully planned involving the patient, making sure the benefits outweighed the risks.

It is all a matter of pros and cons and I would welcome more research in this area.

 

[rasselas]

...

My thoughts (with a focus on under 25s).

* What do you think are the important questions that need answering?

- Why is the technology being considered? Is this best for the service, or is this best for the client? How do we measure the balance of benefits? And to what degree will this be made transparent?

- To what degree will the service be generic, to what degree personalised? When should it be generic, when should it be personalised, and what are the implications of each?

- To what degree is this what people want - are we imposing this technology or meeting a consensual need from service users; how representative is our consultation?

- How will we monitor the effectiveness of the technology?

- Has technology been employed by other countries? What has their experience been? To what degree has their consultation been shown to be representative?

- How do we know the technology is being accessed by the approved person? How secure is our system?

- Who will pay for the technology? How much will it cost? Are we repeating already existing services? Or are we innovating?

- If we are offering information and advice - how free, open and inclusive will that service be? Will we allow the status quo to be challenged with multiple perspectives? Or will we have just one official perspective? To what degree will our information reinforce orthodox psychiatric dogma?

- How will we deal with crisis and disruption? What structures will we put in place? Who will be in control of these structures? How will we measure the effectiveness of these structures?

- What will we do with our data? Who will have access to the data? How do we ensure the data is not abused or mishandled?

* What do you think are the technologies that might be the most useful, that we should be studying?

- Virtual reality communites.

- Forum communities.

- Text messages.

- Wifi brain implants (a joke, maybe!)

* What possible problems might be caused by technologies?

- As previous poster aptly put it - risk of increased social isolation, alienation, worsening of real world social skills.

- If service is anonymous: acting out, lowered boundaries, increased hostility.

- Intrusiveness, data leaks, privacy violations.

- For some - paranoia, suspiciousness - due to above.

- To what degree will the technology be used as an additional tool of control and coercion? Particularly text messages: HAVE YOU TAKEN YOUR PILLS: REPLY: YES or NO...; WHERE ARE YOU?; WHO ARE YOU WITH?; WHAT ARE YOU THINKING?; HOW DO YOU FEEL?; ARE YOU PREPARING TO SLEEP?; HAVE YOU BEEN DRINKING?; BIG BROTHER IS WATCHING...

* Do you have examples of where technology has been helpful or harmful?

HELPFUL

- online forums, for advice, sharing of personal stories and giving support to others - good for self-esteem.

- voip technology - cheap (free), broadened horizons, enabling associations to be formed internationally

- online info websites - offering varied perspectives on mental health issues; broadening the mind

- blogs - engaging with the struggles of people with similar difficulties; putting your own struggles into a broader perspective; realising you are not alone


HARMFUL

- addictive quality of internet interactions - getting dragged into places like forums and live chat, other aspects of life being adversely affected

- anonymity enabling impulsive and reactionary rants and interactions - enabling combatative sometimes unhealthy interactions

- wacky, largely unregulated marketplace - all and sundry out there to make a quick easy buck out of the lonely, the desperate, the vulnerable

- anonymity leading to suspicious thoughts- who is this person? what is their motivation? etc

- difficulty picking up on persons tone - crossed wires

* Who else should we be talking to?

- Me!
- bloggers (see mental health nurse blog for lots of links)
- forums, both funded (like this one) and unfunded
- service user groups
- mental health professionals, particularly assertive outreach teams
- social networking sites for general dialogue on potential pitfalls and vuulnerabilities
- technology experts, particularly ethical hackers
- Mind, Rethink and other charities
- Royal College of Psychiatry and British Psychology Association


I hope that helps.

 

[gcare]

Hi John,

Have PM'd you!

G

 

[OraTor]

Hi

• What do you think are the important questions that need answering?
• What do you think are the technologies that might be the most useful, that we should be studying?
• What possible problems might be caused by technologies?

I'm a relative of a voice hearer. The psychotic decompensation of my relative let me one evening alone at home, the relative was hospitalized ... What was helping? At first the differentiation between schizophrenia as such and voice hearing as the actual phenomenon, for the first time I read about Hannelore Klafki, a german voice hearer. This was a big relief. So technology might help to become aware of information you do not get from the doctors. Discussion groups help the voice hearer and his/her relatives to compare experiences, to relate one-self to others. This is very important. With respect to treatment and speculations about causes I would be utterly cautious, because normally the internet is the place of anything one cannot publish elsewhere.